We decided after Cole's 2 year appointment with the pediatrician to get a second opinion from an alternative ophthalmologist. We have noticed that Cole often walks into things (posts, fences, people). I noticed that he usually looks down when he's walking, as if he's looking at his feet. Given he has only been walking for 2+ months we were hoping his issues are due to being unstable and needing to watch where he is walking (especially due having low tone). He is a lot more stable when he walks now (on flat ground anyway) and is running a lot more often. So running into things is becoming a little more common and he hits harder when he does run into something (or walks right off curbs). Additionally, we have noticed that he won't watch TV but if I give him the iPad or my phone he will hold it about 2 inches from his face and watch for 20 minutes.
Both Johnny and I were hoping that Cole's prescription may be wrong so we could correct the problem easily. We met with Dr. Butera at The Eye Center (where Tiger Woods had his surgery). I guess we should be happy with the appointment because she agreed with the course of treatment that Dr. Jeffrey has recommended and her diagnosis.
I'm still trying to understand how he has a prescription to correct the visual issues but still walks into things. I was told to remember that he has a very rough history with 3 major issues with his eyes and can't expect him to have good vision. Personally I don't think it is asking too much to just have him safe....but I was reminded that "time will tell us how well he's going to be able to see." His biggest challenge is that one eye is farsighted and the other is nearsighted. So after several months of feeling really good about the fact that he is growing and developing, we are once again faced with a "wait and see." There is still no certainty that he will be able to sit in a mainstream classroom and be able to see the board. But there are so many amazing technologies these days, that we are hopeful he could have visually assistive devices that would help him.
I reread my journal entry from our ophthalmology appointment last year at this time and had forgotten how bleak our outlook was for his eyesight. So once again, I find myself trying to remind myself that it could be worse. And trying to be thankful that he is able to walk, able to talk, and able to smile when he sees my face. With every discouraging visit to a doctor, I try to look on the positive side. He does have some ability to see and for that we need to be thankful.
And with that, I am off to bed thinking about my day tomorrow - on top of a full day of work I need to start reviewing the new health insurance policy we will have in January. With the list of specialists we have, it may be an all day activity to see what will be covered and what new problems we may be facing.
Thursday, October 25, 2012
Saturday, October 20, 2012
Activities for Spasticity Hypertonia
Since so many of you comment on my Favorite Phrases updates, I will keep them coming ! Since my last post I got two new comments worth having a good laugh about. The first was a waiter who said, "Are those fashion glasses or does he actually need them?" The second was a man waiting for table at a restaurant. He very innocently asked, "What's wrong with his eye" (Cole had on his patch). After a two sentence explanation he said, "Well he probably just wanted to be a pirate." Nice.
Well we rarely update about mom and dad on this site, so I wanted to add an undate that is non kid related! I was recently voted in as a new member of the Board of Directors for Preemies Today. I have been a member of the non profit since the twins were born and it has been a great resource for information about preemie related issues, building amazing new friendships, and a good way for me to support other parents traveling tough journeys. I am honored and humbled to be asked to sit on the board and look forward to helping increase the awareness about our programs. If you haven't already visited the link I have on my blog definitely take a look and share with others who might need our support. www.preemiestoday.org
Johnny has also had exciting developments with work at the National Center for Missing and Exploited Children. He has moved internally and is now the Executive Director for the Missing Children's Division. He has a lot more responsibility and a lot more hours but he is excited about the new challenges. Although work in his industry is very difficult some days, it is also very rewarding. I am so proud to know he goes to work every day to make our world safer for children everywhere.
We've had a very good week with appointments. Cole had therapy with Heather this week and she is very pleased with his progress. He is now able to identify several alphabet letters and can identify most shapes, including trapezoid, pentagon, octagon, circle, square, oval, triangle and diamond. Notice I didn't include rectangle - he still confuses that with the square so we're working on that one still. Most two year olds should have a 150 word vocabulary and be combining two words. Cole is definitely on track developmentally and even a little advanced since he sometimes combines three words and says three syllable words (like trap-e-zoid). Of course we don't assume this means he won't have developmental delays, but we are so excited that he continues to learn new things and is a very happy and destructive little boy.
Reagan also had a very good week at physical therapy. Now that she is older, there are a lot of new activities we can do to help her improve movement. As you know, she has spasticity hypertonia (high tone) in her left leg. We focus on activities that require her to depress her heel and bring up her toe. Her feet are finally big enough to try swim flippers. This is a great activity with kids with spasticity because you really have to lift your toe to walk and not trip on the flipper. She also practiced with moon shoes. Again, these are made for kids with bigger feet but Reagan rocked those shoes! The premise of this activity is that her feet are supported by rubber bands that are suspended in the shoes. By setting the rubber bands tighter in the front, her heel sinks deeper and it stretches her foot as she walks. The third activity we worked on this week was walking on bubble numbers. These are soft plastic dots that she must walk across from one to the next.
Reagan also had a very good occupational therapy session this week. She was fitted for a new glove and we got it this week. It just happens to be pink. Shocked? I convinced her it is a Super Glove for her Super Bat Girl costume and she has been very good about wearing the glove more than she has in the past (she grew out of the blue one we've had for about a year). Reagan's biggest challenge is being able to control her fingers. The glove helps her extend her thumb. She also has a hard board we can velcro the glove to so her other four fingers are extended. Our hope is that if her hand is kept in this position more often, it will be more natural for her and help her learn to open her fingers.
Not sure why I didn't see it coming, but the new glove has also brought about a lot of questions from strangers. The first few times people asked what was wrong with her hand I would answer, "she has cerebral palsy and has trouble using her hand." This comment always ends in awkward silence and a sense of pity. I now respond, "Reagan, why do you wear the glove?" And with a big smile she proudly says, "it's my Super Glove and it helps me stick my thumb out." Generally this ends the questions and helps Reagan to be proud of her glove. The older she gets the more she is recognizing that things are harder for her than for her friends. It is an ongoing struggle for me to know how to coach Reagan to feel confident. What do I encourage her to do so she can succeed? What should I help her avoid? A child recently told her she was clapping wrong (because she can't get her fingers straight). She fell to the floor and with a tear in her eye she looked up at me and said, "but mom, it's hard for me." It took everything in me not to cry with her. I pray daily that the spirit you see in this picture lives strong within her for her whole life - regardless how many people ask what's wrong with her. God give me strength to remind her every day how amazing she is and how proud I am of the many things she does so well.
Well we rarely update about mom and dad on this site, so I wanted to add an undate that is non kid related! I was recently voted in as a new member of the Board of Directors for Preemies Today. I have been a member of the non profit since the twins were born and it has been a great resource for information about preemie related issues, building amazing new friendships, and a good way for me to support other parents traveling tough journeys. I am honored and humbled to be asked to sit on the board and look forward to helping increase the awareness about our programs. If you haven't already visited the link I have on my blog definitely take a look and share with others who might need our support. www.preemiestoday.org
Johnny has also had exciting developments with work at the National Center for Missing and Exploited Children. He has moved internally and is now the Executive Director for the Missing Children's Division. He has a lot more responsibility and a lot more hours but he is excited about the new challenges. Although work in his industry is very difficult some days, it is also very rewarding. I am so proud to know he goes to work every day to make our world safer for children everywhere.
We've had a very good week with appointments. Cole had therapy with Heather this week and she is very pleased with his progress. He is now able to identify several alphabet letters and can identify most shapes, including trapezoid, pentagon, octagon, circle, square, oval, triangle and diamond. Notice I didn't include rectangle - he still confuses that with the square so we're working on that one still. Most two year olds should have a 150 word vocabulary and be combining two words. Cole is definitely on track developmentally and even a little advanced since he sometimes combines three words and says three syllable words (like trap-e-zoid). Of course we don't assume this means he won't have developmental delays, but we are so excited that he continues to learn new things and is a very happy and destructive little boy.
Reagan also had a very good week at physical therapy. Now that she is older, there are a lot of new activities we can do to help her improve movement. As you know, she has spasticity hypertonia (high tone) in her left leg. We focus on activities that require her to depress her heel and bring up her toe. Her feet are finally big enough to try swim flippers. This is a great activity with kids with spasticity because you really have to lift your toe to walk and not trip on the flipper. She also practiced with moon shoes. Again, these are made for kids with bigger feet but Reagan rocked those shoes! The premise of this activity is that her feet are supported by rubber bands that are suspended in the shoes. By setting the rubber bands tighter in the front, her heel sinks deeper and it stretches her foot as she walks. The third activity we worked on this week was walking on bubble numbers. These are soft plastic dots that she must walk across from one to the next.Reagan also had a very good occupational therapy session this week. She was fitted for a new glove and we got it this week. It just happens to be pink. Shocked? I convinced her it is a Super Glove for her Super Bat Girl costume and she has been very good about wearing the glove more than she has in the past (she grew out of the blue one we've had for about a year). Reagan's biggest challenge is being able to control her fingers. The glove helps her extend her thumb. She also has a hard board we can velcro the glove to so her other four fingers are extended. Our hope is that if her hand is kept in this position more often, it will be more natural for her and help her learn to open her fingers.
Not sure why I didn't see it coming, but the new glove has also brought about a lot of questions from strangers. The first few times people asked what was wrong with her hand I would answer, "she has cerebral palsy and has trouble using her hand." This comment always ends in awkward silence and a sense of pity. I now respond, "Reagan, why do you wear the glove?" And with a big smile she proudly says, "it's my Super Glove and it helps me stick my thumb out." Generally this ends the questions and helps Reagan to be proud of her glove. The older she gets the more she is recognizing that things are harder for her than for her friends. It is an ongoing struggle for me to know how to coach Reagan to feel confident. What do I encourage her to do so she can succeed? What should I help her avoid? A child recently told her she was clapping wrong (because she can't get her fingers straight). She fell to the floor and with a tear in her eye she looked up at me and said, "but mom, it's hard for me." It took everything in me not to cry with her. I pray daily that the spirit you see in this picture lives strong within her for her whole life - regardless how many people ask what's wrong with her. God give me strength to remind her every day how amazing she is and how proud I am of the many things she does so well.Monday, October 8, 2012
Cole Turns Two !
Monkey See Monkey Do,
Our Little Monkey Made It To Two !
It has been a busy week. We celebrated Cole's 2 year birthday on Saturday, October 6th with a monkey themed party. We felt very blessed to be surrounded by so many of our friends and family who have prayed for Cole over the last two years. He had a fun time playing on the jungle moon bounce, watching his friends get their faces painted, playing chase with his friends, swinging in the basement and playing in the infamous "tent".
I am excited to share that he had his 2 year pediatrician's appointment today and he is finally on the growth chart! He is 1% for weight and 4% for height. Praise the Lord! And that is without correcting for age (he is technically 3 months behind but they stop correcting at age 2). So the moral to the story is....slow and steady wins the race? Or maybe PERSISTENCE?! Any way you look at it, we are so proud of Cole for the accomplishments he has made over the last year and can't wait to see what the next year will bring. I am always amazed with all I can learn from such a young man.
To follow our new annual tradition, we also spent private time as a family on Sunday to remember Kendall. We went to my parent's property in Philomont to start a small bonfire and light a lantern in memory of Kendall on the anniversary of her ascension into Heaven. Unfortunately it was a little colder than last year and definitely a little more rainy. Even though they don't understand the intentions for our memorial, the kids were really good sports about the cold and rainy activity.
As we watched the lantern rise into the sky toward Heaven, we reflected on how much we have learned from our little angel. The memories of holding Kendall are still very close to our hearts and the pain of not being able to watch her grow up will always sting. But as I reflect on our loss, I wonder if I have misunderstood her purpose. I have always believed that Cole was delivered early and suffered selflessly to give his sister a chance at life. When Johnny and I were given the option to let her perish in the womb to give Cole just a little longer to get stronger we both believed if we could ask him that he would want to give her a chance to live. 
As I thought about Kendall yesterday I started to think....perhaps she is the one who fought selflessly to give Cole a chance at life. She started to lose amniotic fluid at 18 weeks. The fact that I did not get an infection and that she lived until 25 weeks and 6 days is a miracle in itself. Perhaps Kendall is also a hero for fighting her battle for so long to make sure Cole was able to have the energy to fight the battle he would soon need to face.We miss our baby girl. And although a day doesn't go by that I don't question why God has taken us on this journey, I thank Him for the two beautiful children that keep me wanting to be a better person. I marvel at every new thing they learn and I am reminded that miracles do happen. If blessings were dollars I would be a very rich woman....
Tuesday, October 2, 2012
What not to say to a kid with glasses...
As we get closer to Cole's birthday we've been reflecting a lot on the last year and how far we've come. I thought it might be comical to detail a few of the bizzare comments we've heard about Cole over the last year. Below are several of the characters people think look like our son. Although I find the comments commical, I would love some recommendations for good one-liners to respond. Anyone have anything they'd like to share? I don't want to be rude because I know most people are just trying to find something to say. My advice to all of you is that it's ok to just tell someone their child is cute. Or tell them he has amazingly blue eyes or adorable blond hair. This goes for children in wheel chairs, with braces, or any other less common assistive devices. My theory is that people are uncomfortable because they look longer at children with assistive devices (like wheelchairs or very small children with glasses or patches) and then they think they need to say something. I can guarantee we won't be getting comments like this when Cole is 10 years old. 
We've gotten all of these comments...Harry Potter, a robot, the kid from Jerry Maguire, Alvin (I'm assuming she meant Simon since he has glasses)...The only one below that appears anywhere close is the kid from Jerry Maguire. Just for the record, his name is Jonathan Lipnicki.
The latest is Shirlock Holmes. I couldn't find a single image on the Internet with Shirlock Holmes wearing glasses....except the ones of Robert Downey Jr. Oh, and after telling us Cole looks like Shirlock Holmes he proceeded to tell us, "he looks so smart - he will probably be smarter than all of us combined." The foot just kept getting buried deeper and deeper ! So did he look like Shirlock Holmes because he looks smart? I'm still confused !
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