Monday, May 16 2016
I'm posting an update on Jax's eye health because everyone I run into asks me about him and how he's doing. I will be forever grateful for all of the people that care about and support us, and we truly appreciate people asking about how he's doing, this is just the easiest way to update the masses, so here goes.
I got a call from the school nurse last week. She asked me to come pick Jax up early because his teachers thought he might have pink eye. I tried reassuring her that he didn't have pink eye, and sometimes his eye gets dry and a little red, but she insisted I come and get him.
Knowing that his pediatrician would look at his eye and not know what the hell was going on, I headed straight to Iowa City so we could see his pediatric ophthalmologist. My intent was to be seen, get a note that he in fact, did not have pink eye, and be on our way.
They got us in fairly quickly and after we established Jax was pink eye free, the fellow in the peds ophthalmology clinic decided we should check pressures and do an ultrasound of the eye while we were there.
Jax's pressure in his glaucoma eye was 10! I was super excited but had a feeling it was too good to be true. Jax was a champ and let them test it again (we normally do this under anesthesia, so the fact that he checked it while Jax was completely aware was amazing in itself) and again, the pressure was 10 (which is normal, it was previously in the mid-20's).
We then headed down the hall to get an ultrasound done to make sure there was no infection, and again, he was a champ. Toward the end of the procedure, I heard the nurse say, "hmm" which is never a good sign. Naturally, I asked her what she saw and she said, well, there's a membrane that wasn't there before.
We headed back to Jax's room in the peds clinic and my excitement about normal pressures turned into a knot in my throat. The doctors and nurses in the eye clinic at the U have known Jax his whole life, so when we are about to get bad news, its written all over their faces.
Dr. Larsen came in and sat down and told me that his retina is detaching and right now, trying to fix it would do more harm than good since Jax can't see much with that eye anyways. This was creating more room in his eye, which was why his pressure was normal. I was devastated.
After a transplant, 16 eye drops per day, peeling tape off of my baby's face multiple times a day, 3 glaucoma surgeries, multiple EUA's, heeling abrasions on the surface of his eye, and putting in/ taking out a hard contact lens (and crawling all over my house to find it when it fell out multiple times), I felt like all of our efforts to keep this eye safe for a future procedure for vision was a wasted effort. My heart was broken.
We have an appointment at the end of the month to confirm the prognosis and see whats going on, but we are just going to let nature take its course and it will eventually be completely detached, taking away whatever vision he does have in that eye.
After all of this, I was thinking about how far we have come and what the doctors told us at the beginning, that Jax would be blind. Among many things we feared for in his future, we imagined he would have to learn braille or use some type of tool to help him read.
We were reading a book at bed time tonight and this happened. He could see every little red apple on the small page. My heart turned to goo, it was precious.
This kid is incredible. Every time we have a set back, he proves he's gonna be just fine. I just love him so much and Tyler and I have learned so much by being his mom and dad. He'll always be our little super hero!
Click here for video: https://www.facebook.com/CaptainJaxFFS/?fref=ts
Thursday, October 15 2015
We got some great news today!
Jax's eye is growing at the normal rate and his pressure was in the 20's! Dr. Kwon said the 2nd laser surgery worked and no more surgery was needed today.
We were pretty much expecting Jax to need surgery today, so we are very happy. He didn't even cry coming out of anesthesia, what a trooper! I think mommy cried more than he did today ha!
We also ordered his new glasses today, so that is our next adventure!
Thanks so much for the thoughts and prayers! God is so good!
Monday, September 28 2015
Jax and I were at lunch today and he was just looking out the window, watching the cars and the people outside, when he cocked his head to one side (because that is how he sees best), pointed at Hardee's and said, "gold star."
I could not BELIEVE he could see that far! I heard what he said and had to do a double-take to make sure he was pointing at what I thought he was pointing at.
It made me so happy and thankful that I got choked up right there in the restaurant.
We've come so far in 2.5 years. I wouldn't have dreamed he'd be doing this well the day that we learned about his little eyes.
I get messages quite often from parents who are just starting out on a similar journey with their kids, that we have been on with our Jax. I choose to share these little moments to give them hope for their babies' future.
Because in the beginning of this scary journey with PA, all we parents really have to hold onto is the hope that everything will be okay.
That is why I am going to start posting on this page again. I have been absolutely terrible at keeping it up, but as I look through my inbox, I see all of the messages from people thanking me for sharing our story, just because its so comforting knowing you aren't alone in your battle.
Peter's Anomaly is hard, like really hard, and so unpredictable for the families with kids who have it. For example, Jax has an exam under anesthesia on Oct. 15th and we won't find out until the middle of the exam if he will be having surgery for glaucoma at that time.
We are part of a small, private, Facebook group with other parents of kids with Peter's where we share our experiences, good and bad, and offer each other support on this journey with our kids. I honestly don't know who I would be able to talk to if we hadn't met these awesome families through Facebook.
If anyone out there has a child with Peter's Anomaly and needs a support group or just needs a place to feel like someone actually understands what you are going through, send me a private message and I can tell you how to join the group.
Glad to be back!
Wednesday, July 22 2015
The University of Iowa Hospital is typically a safe place for us. It's a place where we run into a lot of people who are "different." Being there always reminds us of how much worse it could be for us.
We were running a little late for Jax's appointments today, so I was speed walking with the stroller to make it to the eye clinic on time. I got stuck behind a dad holding the hands of his two sons, one on each side of him.
I slowed down and walked behind them for a few seconds because I couldn't get around them. One of the little boys, who was probably 5 or 6 years old, turned around and was staring at Jax sitting in the stroller.
I heard the boy mumble something as he was staring at Jax, but I couldn't quite make out what he said. I believe I heard the words "baby" and "weird." I wasn't 100% sure what I heard and I was in a hurry so I gave him the benefit of the doubt and kept walking.
Then I heard the little boy turn to his dad and say, "Hey daddy, that baby looked really weird." At this point I stopped walking and I quite obviously stared at them to observe the dad's response to his son calling a baby he saw at the hospital weird-looking.
I saw the dad look down at his son and I heard him say, "yep" and they continued walking.
As I said in my earlier post, I'm not angry at the child. He was just a curious little boy who saw something he had never seen before and expressed that he noticed Jax's difference by saying that Jax looked weird.
I was, however, a little pissed off about how the dad handled this situation and if I hadn't been in such a hurry I would have said something to him.
I know we can't be perfect parents all of the time and who knows, maybe the dad had a loved one in the hospital and his mind was wandering at that moment or maybe the kid continuously jabbers and the "yep" was an automatic response to get the kid to shut up.
Regardless of this dad’s situation, it got my blood boiling to hear him not only let his kid get away with saying something like that to a stranger, but he responded in a way that the child could have easily perceived as agreement from his father which is kind of like telling the boy that its okay to say things like that to others.
Witnessing that interaction today just further illustrates that I can do the world a favor by attempting to make parents aware of the importance of using situations like these as a learning tool to teach their kids about empathy and differences.
Parents should also be aware of the fact that, in the eyes of a parent of a child who has a noticeable physical difference, there is a right and wrong way of responding to their own child unintentionally saying something inconsiderate to a stranger.
Maybe some people out there just don't care about how their kids' choice of words effects a total stranger, but just remember, it’s hard to see someone else’s perspective on something like this until the issue becomes a personal one.
I’d hate for anyone to experience something that left their child with a noticeable physical difference that made them look creepy or weird, but if something like that did happen, I can guarantee they would start to care if random strangers let their kids call their baby creepy.
I truly appreciate everyone out there who shared, liked, or commented on my last post. It was totally worth writing if even just one person learned something from it and had a conversation with their kids on this topic.
I encourage everyone to keep sharing! Who knows, maybe it could be beneficial to someone close to you someday.
Tuesday, July 14 2015
My 2 year-old’s eye looks different than everyone else’s. Kids approach me quite frequently to ask me about Jax’s eye and why it looks the way it does and I LOVE it. To me, questions beat stares and whispers any day.
The kids all respond to the appearance of Jax’s eye differently. Some respond in a positive way, others in a negative way. I expect this and understand that they are kids who learn by the example of their parents, guardians, and peers.
The most popular response I get from kids is, “He looks creepy.” Yeah, as Jax’s mom it stings a little to hear that other kids think mine looks creepy, but they are kids and I know at a young age they have a small vocabulary and little understanding of what empathy is.
What I really pay attention to in these situations is not what the kids are saying, but how the adults respond to what their kids are saying. These are the top 3 responses I hear from parents concerning their child’s comments:
1. They say nothing about their child’s comment during the interaction.
2. They say, “That’s not a nice thing to say” to their child and that’s that.
3. They say, “He/she doesn't know any better.
- To the parent who says nothing: Saying someone looks creepy just isn’t okay and it doesn't make them feel good. Jax doesn't understand what they are saying right now, but he will someday, and he’s not going to take it as a compliment.
Maybe you didn't hear your child, or maybe you are embarrassed and will say something to them later, but just know that this situation can be a great learning experience for your child if you are prepared for it and say the right things as it happens.
As the mom of the kid who is being described as creepy looking, I’d much rather see you get down to your child’s level and have a talk about differences right there in front of me than to say nothing at all.
You might go home and have the conversation later, but I won’t know that. I will either do your job on the spot and have the conversation with your kid myself, feeling like I am stepping on your toes the whole time, or I will think about the interaction later on and wish that I did say something to spare the next "creepy" looking kid your child encounters.
- To the parent that says to their child, “that’s not a nice thing to say.”: It was very nice of you to stick up for my child and all, but kids hear the phrase, “that’s not nice” on a daily basis. This sentence is a good start to the conversation, but to me, it feels like you are just saying this out of obligation. The lesson probably won’t stick if they don’t understand the reason why telling someone their physical difference makes them look creepy is insensitive and rude.
I am begging you to teach your kid the meaning of the word empathy. Actually sit down and talk about it. Teach them how to put themselves in someone else’s shoes. Teach them the Golden rule. If you forgot what the Golden rule is, it says to treat others the way that you would like to be treated.
It's as simple as saying, "how would you feel if you were him and someone called you creepy for being born a little different?"
-To the parent who says, “they don’t know any better.”: Regardless of your child’s age, hearing you use it as an excuse for why your child said something mean to another person, whether it was intentional or not, is not a response from a fellow parent that I respect.
If they honestly don’t know any better because they are young, that’s fine, but I’m going to respect you a lot more if you say they don’t know any better, but it is definitely something that we are going to work on.
It’s our job as parents to make our kids know better and that is why I created this post.
I understand that parents get busy and might forget to have a conversation with their kids about social etiquette, kindness, and empathy towards others. I also understand that although some parents try their hardest to instill these qualities in their kids, kids still slip up and unintentionally say hurtful things, but being ready to handle the situation with your child so a stranger doesn't have to is important.
Hopefully this post will inspire a family or two to sit down and have this conversation. Show your kids a picture of Jax or anyone else who looks different and tell them that it’s okay to ask questions and be curious, but to be mindful of the way their comments might make the other person feel.
Not only can you teach your child a valuable life lesson in this situation, you can also bring comfort to a mom or dad who is most likely worried about these interactions his or her child will face in the future when they aren't there to stand up for their kid.
We think it's and important message, feel free to share if you agree!
Friday, May 22 2015
Everyday we go outside and Jax pushes his truck down the driveway. He then takes a left or a right onto the sidewalk and back and forth he goes, occasionally stopping to check out a rock or something in the grass that catches his eye.
Everyday I stand in the driveway and watch Jax push his truck back and forth, occasionally yelling at him to turn around when he's gone too far.
Everyday I am so grateful to watch Jax do things that little boys do because when he was born blind, I never thought he'd be able to find his truck in the garage, push it down the driveway, know where to turn to get onto the sidewalk, and examine the leaves and rocks he sees in the grass, all on his own.
A truck full of construction workers drove by yesterday and stopped as they turned the corner by our house. They watched Jax push his truck and one of them said, "We just love seeing your little boy, keep on truckin' buddy."
Little does he know, Jax has taught us all that we've just gotta keep on truckin'. Sometimes the terrain is rough, so rough that you aren't sure if you can make it through, but when you do, the small things that you once took advantage of become miracles and you can truly see the beauty in the things you once would not have thought twice about.
When something is unexpectedly ripped away from you, the feelings of devastation and hopelessness are overwhelming. When you miraculously get back what you lost, that is when you truly appreciate and understand what it means to be grateful.
Be grateful, my friends.
Sunday, July 06 2014
July 4th, 2014 was spent at my brother and sister-in-law’s house in Hills, Iowa. We spent some time with friends and family, ate some great food, had a few drinks, and watched an excellent fireworks display.
Because I’m an awesome wife, I told Tyler to spend the night with his brother in Hills and that I would take Jax and the doodles home to bed.
The four of us began our 40-minute drive at around 11:30 PM. About five minutes into our trip, both dogs and Jax were sound asleep. I found myself alone with my thoughts, reflecting on this Fourth of July compared to last.
As I thanked God for making today absolutely stress free, I felt a tiny lump in my throat accompanied by a burn in my eyes. I realized that today was what a holiday was supposed to feel like, and as a family of 3 (+ 2 doodles), it was the first time I had nothing weighing on my mind, other than why I had eaten so many pieces of cake.
Jaxon’s first ever exam under anesthesia (EUA) was on July 5th, 2013. Last Fourth of July, we did exactly what we did today, only Jax was just under 3 months old and we were under the impression that he would be blind. We had no idea what we could do to help our baby and none of our questions had been answered yet.
I remember sitting in a fold out chair in the driveway that night, watching the fireworks with a trembling doodle in my lap, wondering if my son would ever enjoy fireworks as much as I do. As I heard the other kids exclaim, “Whoa mom, did you see that one?” I couldn’t help but be a little jealous because I didn’t know if my son would ever say those words to me.
I laid in bed that night and tried my hardest to fall asleep. The results from this first EUA would indicate whether we could go ahead with a cornea transplant or not, so you can only imagine how hard it was to turn off my brain to go to sleep.
4:45 AM came way too soon, but after 3 months of waiting, we were ready for some answers.
We found out some crucial information after that first EUA. Jaxon’s lens and cornea were not attached and he was a good candidate for a cornea transplant. This was the information we prayed to hear and thus, the roller coaster left the gate and the yearlong ride began.
I’m not going to go into detail of the ups, downs, curves and loops we’ve encountered on this ride, but today I finally felt as though our first thrill ride was over.
After the transplant itself, all of the post-transplant care and appointments, the numerous EUA’s, developing glaucoma, having glaucoma surgery, and the ultimate failure of the transplant, we made the decision to hop on the ski lift, instead of the next roller coaster.
We decided as a family that the best thing for Jaxon (and us) right now is to deal with the glaucoma, but let everything else be. We wanted the security of knowing that this ride would be free of the unexpected ups, downs and loops, so we chose the ride with a more predictable path. We know that sometimes the ski lift gets stuck, and a little maintenance is required to get it going again, but those little bumps are a walk in the park for us now compared to what we went through last year.
At first, vision was the most important thing to us. We would have done anything to help this kid see, because seeing was what we thought was normal. We were scared because blindness is nothing we had ever experienced before. We didn’t know how to treat blind people, we didn’t know how to raise a blind child, and at first, we definitely weren’t thinking that there might be something positive that could come out of this.
But as time went on, something changed and quality of vision became less important to us. As we saw Jaxon’s personality develop and eye drops and baby glasses became our norm, we started to understand that this little boy is as normal as he can be and we decided we didn’t want to effect his quality of life just "Because of what society as deems normal."
Jaxon is doing just fine with the limited vision that he has in his other eye, and we have been blessed with a miracle that the cloudiness in that eye is only getting clearer. He is a curious, fearless, and silly little kid, just like any “normal” 1-year-old boy. Visually impaired is our normal now, and he has led us to discover so much about our strength as individuals and as a family.
Today I didn’t worry about Jaxon’s next appointment or his next EUA, I worried about his little knees as he crawled around the driveway and garage exploring every inch of the place.
Today I felt blessed that I got to see my son see. I got excited when I carried him towards his puppies and he got a huge grin on his face and said, “Addie” from 5-feet away. This happens everyday, but it is something that never gets old for us.
Today I sat on a blanket with my son in my lap and I watched him turn his head to the side and watch the fireworks, because that is the best way that he can see them. He might have only watched them for a total of 5 minutes before wanting to crawl around and explore some more, but that’s okay, because I know that in a couple of years it will be my son that says, “Whoa mom, did you see that one? It was awesome!”
Tuesday, June 24 2014
Jaxon spent his first 17 days of life in the NICU at the University of Iowa Children’s hospital. When we were discharged from the hospital, I had an entire bag full of papers and information regarding the medical procedures he endured in those first 17 days. When we got home, I was overwhelmed with all of this information and my brand new baby’s vision issues, so I dropped the bag full of papers in the corner of his nursery and left it there.
Over the next few months, I collected papers from his doctor and hospital visits, his first EUA (Exam under anesthesia) and new prescriptions. When the pile on my counter grew too big, I threw those papers in the bag in the corner of the nursery as well. I was a new mom, with a baby that had special medical needs. I was exhausted, stressed, and still pretty down in the dumps about the news regarding my son’s vision. Although organizing Jaxon’s medical information would have probably made me feel a lot better, it was the last thing I wanted to do at the time.
As time went on, I began to accept and understand that watching our baby be taken back to the OR for procedures and exams under anesthesia would be our new normal. Although that part never got easier, there was a way to help me feel better about the at home care required after his procedures. Before and after the exams, the doctors and nurses would ask us all kinds of questions. They would ask about his medical history, they would ask when he last had each medication, and then they would ask us if we had any questions for them. I found myself saying, “Uh… umm… I think it was yesterday at 6 pm?” or “I can’t think of any questions right now…” regardless of how many questions I had thought of the night before. All of the questions always popped back into my head the moment we left the hospital.
When Jaxon was four months old, he had a cornea transplant. We went home the next day with seven different eye drops. The number of times each drop was needed varied, and the grand total of drops per day ended up being 17. To make things even more interesting, Jaxon had to wear an eye shield over his transplant eye until all of his sutures were removed. We put duoderm tape on Jaxon’s skin around his entire eye and taped the shield on. Even with the duoderm there to protect his skin, peeling the tape off was never fun for either of us.
Luckily, I am able to stay at home with Jaxon so I was doing most of his drops. But even then, keeping track of what drop was due at what time wasn’t easy. When Tyler was home, he would also do drops so it took some major communication to know when drops needed to be done.
This made organization extremely necessary and thus, Mommy’s “Everything Jaxon” binder was born.
Mommy’s “Everything Jaxon” Binder
This binder is where I keep every piece of paper that contains information about anything related to Jaxon’s medical journey. Even if I don’t think I will ever need the paper, I three-hole punch it and put it in the binder, just in case.
I take it with me to the hospital for his exams and I have it at home if I ever need it. Even if it turns out to be useless in the future, I will consider it a journal about all of the things we went through when Jax was a baby.
Drug Information Sheets
I always keep the information sheets about Jaxon’s prescriptions. The hospital usually gives me one when he gets a new medication and one always comes with the drug from the pharmacy. I have referred to these more times than you would think.
With easy access to Google these days, you can probably just search for drug information on the Internet, but I feel more comfortable reading information that came directly from Jaxon’s doctors.
An example of a time I referred to these papers is when I was trying to solve the mystery of Jaxon’s dry mouth. I read through the information sheets of every medication he was on until I found the one with the side effect of dry mouth.
DuoDerm Extra Thin CGF Dressing
Although this dressing is made for wounds, we used it as a protective layer for Jaxon’s skin. It can be left on for up to 7 days straight and the adhesive reacts with moisture for easier removal.
When Jaxon had to wear the protective eye shield, we taped it to the duoderm instead of his skin. Because he needed drops multiple times a day, we didn’t want to have to peel tape off of his skin every time. This made it less painful for him (and easier on mom and dad) when removing tape. It can be purchased online.
Eye Drop Bag
This is an example of how I packaged each of Jaxon’s eye drops inside of his larger medicine bag. The outside of each little baggy has a label. On the label I wrote the name of the medication, the number of times he needed the medication, and which eye the drop went in. This was helpful for not only daddy and I, but also for babysitters.
For a larger view click here https://o.b5z.net/i/u/10029653/f/Eye_drops_chart_1.jpg
For a larger view click here https://o.b5z.net/i/u/10029653/f/eye_drops_Chart_2.jpg
Eye drops Charts
When you have more than one person giving drops, we discovered that it’s important to have a system to keep track of the times each drop was given. We kept these charts and a pen with Jaxon’s drops so every time someone gave him a drop, they could write down the time it was given to let the next person know what time he needed his next dose.
These charts are also helpful when you have a high number of drops per day. It’s not easy to keep track of whether or not a drop was given at a certain time without writing it down.
Our charts were also useful when Jaxon had exams under anesthesia. The nurses asked us approximately what time his last dose of each medication was. They seemed surprised when I gave them exact times like 9:27 p.m.
The second chart I created was a little more complicated to make, but it was a paper saver. I included the number of doses per day under the medication as an easy reference for daddy and I and for babysitters.
These are our only drops at the moment!
Atropine – Used as a long acting dilator. I put one drop in Jaxons left eye every 3 days. It can also be used to relieve pain caused by swelling and inflammation in the eye. We have used it after every procedure Jaxon has had done on his eye.
Jaxon has been on this drop since he was 4 months old. The only major side effect we have notice is dry mouth. It only lasts for a few hours and he has begun to tolerate it better from long-term use.
Phenylephrine- Used as a short acting dilator. Jaxon gets a drop 2-3 times per day to dilate his eye even further than the atropine can. This drop has no side effects for Jaxon.
Dorzolamide-Timolol (Cosopt)- This drop is used to control Jaxon’s glaucoma and lowers the pressure of his eye. I think he experiences some burning and itchiness with this drop as he sometimes rubs his eye a lot after getting it. It doesn’t last long.
This is what the eye shield looked like that we taped over Jaxon’s eye after his cornea transplant. It was hard to come by these tiny baby shields at the hospital. You can find places online to order them.
We had a hard time keeping these clean because of the residue left from the adhesive on the tape. They also scratched easily so we tried to keep a couple extra shields on hand (if we could find them) to swap out so Jaxon had a clear window to see through.
Individual drop bag and med bag contents
This is an example of what I keep inside of each individual drop baggy:
This is the bag that I keep all of the smaller med baggies in. It’s an easy way to keep track of where all of Jaxon’s meds are and it fits in his diaper bag so we can take it with us anywhere we go.
Thursday, June 12 2014
Jaxon's daddy posted this inspiring video on his personal Facebook page that was shared by the performer Diddy. I figured I should share it with all of you. As parents of a visually impaired child, we were worried about our son being blind because blindness was not "normal" to us. Everyday, our visually impaired son shows us that overcoming the obstacles associated with blindness is now our "normal" and everyday it gets easier to cope with.
Here is what Tyler wrote on his post:
"When the doctor told me at 3 days old (after weeks of uncertainties as to why my son was so tiny before we saw him) that he would be blind, I had to go to corners of the hospital to keep from crying in front of Alyssa. I remember calling my family and tearfully telling them that Jaxon would never see my face, or know what either of his parents look like. I cried in the hallway with Alyssa's mom after the first eye exam with the ophthomologist when Alyssa caught me after hiding it.
This little boy is an example of the unexpected and unrelenting strength that I hoped to impress upon Jaxon. I had never known a blind person, and didn't have the first clue as to how to teach a son that couldn't see how to grow up, but I was determined.
I post this because you might find yourself in what should be the most beautiful moment of your life turn into the most painful day that you'll never forget - either way you will grow, and your child will grow from your strength.
Jaxon now crawls around with limited vision out of one eye, and to us he is "normal". He throws things on the ground, he cries when things are taken from him, and he smiles at you as he glares out of the one good part of his eye to get a good view of you.
He is everything that makes me tear up out of joy just crawling and knowing where he's going. Occasionally he smacks his head on a door, but every placement of hand or knee is a learning moment, and not just for him. Enjoy every step of the way, every movement is a gift and privilege that might not always be there."
Check out the inspiring video here: