Lucy is just over two months old. We had her two month check-up this week and the pediatrician told me she's "perfect" - doing everything she should be doing, if not more. As she checked Lucy's eyes with the light, I smiled and knew how precious it is that she can even do that part of the exam. Lucy's pupils shrank, and the doctor saw two bright, red reflexes, no problem.
At this point in Avery's life, she was barely getting over her bacterial meningitis infection, and we were being told that her new cornea transplant was failing before it even had a chance to work. We were just starting therapy to get her to learn to turn her head toward a light, or to bring her legs to an noisy object so she would be aware she could kick her legs. Avery was completely blind and as cruel as it sounds, was basically behaving like a slug. I am aware that two- month-old babies don't have a completely developed vision system, and they are not seeing very clearly. The pediatrician and eye doctors assured me of this over and over when they examined Avery. However, I'm now aware that they were just trying to make me feel better. The difference between Lucy's vision at two months and Avery's is incomparable. It is glaringly obvious that Lucy sees - she smiles at the sight of our faces, she tries to bat at the toys hanging from her gym, and she turns toward me as I walk by her. I can move a toy over her head and she tracks it. It's an amazing experience that takes my breath away every single day. John and I still think "so this is what it's supposed to be like!" It's a feeling you could only know if you only ever had a baby who did not do what they "should be doing." And I'm grateful to know this feeling because I wonder if I would just take all these milestones for granted if I never had Avery. If I never knew how it feels to have these things absent, would I appreciate so much that they are happening, so easily, every day with Lucy? I feel like I get a gift that many moms don't. It also makes me appreciate and respect people like my dear friend, Joanna, who like many other special needs moms, had her "typical" child first. She knew what her baby "should be doing" and every day had to look at her second born daughter, with Peter's Anomaly, who was clearly not doing those things. I can imagine that instead of feeling relief and joy every day, like I am, she felt scared and so sad. I can also now appreciate even more all my friends who had their special needs baby first. We were hit with moments every day of our second pregnancy when the fear of "it happening again" paralyzed us. And when the baby is born healthy, we were overcome with so much relief and happiness, words will never describe. It's just an incredible feeling that you have every time you look at your healthy child, or experience them meeting a milestone that your first child did not.
Many times I also feel guilty for being so happy about how easy and typical Lucy is. Neither we nor Lucy have to work as hard as we did with with Avery. She eats, sleeps, poops, plays. That's it. Besides her little stint in the hospital, she only has to go to the doctor for routine visits and shots. And not to minimize the experience of watching your baby get a shot, but .... it's not a big deal. If you never had to see your baby go through anything worse, then I can see how it may be traumatizing. But let me assure you, it's not. They don't even remember it 2 minutes after it happened. As Lucy was getting her three pokes this week, my exact thoughts were, "aww, she looks so cute hysterically crying!" Again, that may sound harsh, but only a mom who has seen what I've seen would understand that shots are no sweat. This second experience is a completely different one than my first, and has made me a different kind of mom. I have to learn how to juggle my two completely different children, and as they get older, learn to take both of their feelings into consideration. Lucy will feel like we favor Avery since she'll require more time and attention. And Avery may feel jealous of Lucy, who doesn't have to struggle with the same things or feel different from everyone else. Our lives will continue to be challenging, and I'm sure there are things that lie ahead that may suck more than what we've already gone through.
But in keeping with my "take it one day at a time" mantra, today I'm grateful for the gift of appreciating that in their own different ways, both my girls are looking at me, smiling, and doing what they should be doing.
Friday, December 6, 2013
Wednesday, October 23, 2013
What else?/Welcome Lucy
I know this blog is mainly about Miss Avery, but I have to welcome her new sissy, Lucy Vivian to the world. She was born on September 27th, and has brought us so much joy during a very challenging year. While we've had plenty to worry about besides Lucy's health, the fear of her being born with Peter's Anomaly or some other issue was always in the back of our minds. We held our breath as we waited to see her for the first time - since I had a c-section, we had to wait what felt like hours before they brought her over to me. We joke that she knew we were worried about her eyes, because she opened them for the first time when we got her, and kept them wide open for a really long time. What we saw I will never forget - crystal-clear corneas over her brownish-gray eyes. I am still amazed every time I look at her. Bright, red reflexes, no glaucoma and healthy retinas. We are so grateful for this, and the fact that everything else about her from her head to her toes, checked out totally healthy. We got the experience we never had with Avery; to have our newborn stay in the room with us, not hooked up to monitors or tubes. No bad news, no specialists, no sad tears. It was a totally typical experience, and we treasured every moment of it.
Like most new parents of two, we haven't been out much or spoken to a lot of people since bringing Lucy home, but it hasn't been a very easy month. When we do talk to anyone, we get the same reaction; "wow, you guys really can't catch a break!" And that's really what it seems. Practically since we rang in this year of 2013, we've had our bumpiest year since the year Avery was born. Most recently, Avery's had several weeks of illness that left us guessing each day if her shunt was to blame. Once you see your child wake up vomiting and lethargic and it leads to brain surgery, you will always associate those symptoms with brain surgery. No matter how many times the doctor tells you it's just a virus or it's common for kids in school - it doesn't matter. The memories of those symptoms leading to something serious are impossible to shake. So, with how often Avery has been sick over the last few months, we are constantly guessing what the reason is, and hold our breath each day to see what shape she'll be in. I started marking sick days on the calendar, and we are currently in our longest streak - one full week - (knock on wood) since July. There was so much going on in our lives in the week leading up to Lucy's arrival, but Avery being sick was the worst. Leaving her to go to the hospital was so hard, and thankfully nothing serious ever happened.
In addition to Avery's touch-and-go health, we have dealt with several other things. While I don't want to go into all of them, each one has challenged us in every way possible and taught me (if I didn't know it already), that we really can handle anything. I keep thinking that if one more thing happens to us, I'm going to fall apart, but I know deep down that I will not. Life keeps handing us challenges, and we keep dealing with them as they come. And we know it can be worse, so that's always in the back of our minds.
One of those things was Lucy's illness last week. When we brought her home, all perfect and healthy, we never imagined we'd be back in the hospital with her just two weeks later. But that's where we ended up last Tuesday night, after a long day of her acting sick, and eventually her fever went up to 103. We assumed she had caught it from her sister, who had become a walking germinator. We were warned that because of Lucy's age, she'd have to be tested for everything and be admitted. While we aren't strangers to watching our baby go through spinal taps and have blood drawn, it's still very painful to watch. We were told that the protocol for a newborn with a fever is all these nasty tests, plus putting them on proactive antibiotics. Which - sidenote - was NOT the case three and a half years ago when we brought Avery into the ER with a fever at 7 weeks of age. And she had had brain surgery with a leaking incision! We are very angry about learning this "protocol," because if Avery had received proactive antibiotics, she may have never developed meningitis, which is why she's going through all of her neurological issues today. (We have definitely stored that information for use later.)
Anyway, we found ourselves bunking at the hospital once again, only for poor Lucy this time. We had made plans for what we'd do with Lucy whenever Avery is in the hospital, but didn't really plan for the other way around. We haven't really told many people until now, but the final diagnosis was rhino-enterovirus that spread to Lucy's spinal fluid, which made it a viral meningitis. When I heard the doctor say this, I turned white. The word, 'meningitis,' is a four-letter word in our house. John wasn't at the hospital at the time, so I had to process this alone, and I proceeded to ask the doctor one. million. questions. She assured me that this was a totally different kind of meningitis than Avery's. It's actually the least serious, and they have to call it meningitis simply because where the virus spread to. Newborn's immune systems are underdeveloped, so they can't contain a virus like ours can. They assured us it's not uncommon, and very easy for her to get. But still, we were shocked and felt extremely guilty. How the hell can we end up with both our kids having a form of meningitis? We may have a cluttered house, but we sanitize, we wash our hands - we aren't dirty! After the doctors assured us over and over that we can't blame ourselves, we still do, but that's part of being a parent. Luckily, Lucy made it through her stay with minimal issues, and we were discharged two days later. I hope that was her last hospital stay. And Avery was happy to see her sissy home again, even though it meant that I follow her around 24/7 with sanitizing wipes.
We had also found out on the day that Lucy was born that my Grandpa Johnson was diagnosed with colon cancer. It had spread to other organs, and he was put on chemo pretty quickly. The day we came home from Lucy's hospital stay last week, we sadly learned that he had taken a turn for the worse. I was able to be with my family over the weekend and see him one last time, but he peacefully passed away yesterday. Our family won't be the same without him. He was a great guy, and I'm lucky to have been able to call him my grandpa. Your "Annabelle" will miss you, Grandpa.
John and I look at each other a lot lately and know what each other is thinking; "what the hell?" - but like I said, we just keep on going. While these events are the main issues, we have had many other things working against us lately, and testing our strength. I'm proud of us, but also hope that we are done being tested for a long time. I used to wish for a crystal ball, but lately, I don't really want to know what's around the corner. I will just know that we will deal with it and take one day at a time. I never thought I'd accept that cliche, but I don't really have a choice! For today, I'm grateful that we reached one week of Avery being healthy and she's even eating like a horse. Lucy is growing and back to healthy too. The sun is out. Not thinking beyond those things.
Like most new parents of two, we haven't been out much or spoken to a lot of people since bringing Lucy home, but it hasn't been a very easy month. When we do talk to anyone, we get the same reaction; "wow, you guys really can't catch a break!" And that's really what it seems. Practically since we rang in this year of 2013, we've had our bumpiest year since the year Avery was born. Most recently, Avery's had several weeks of illness that left us guessing each day if her shunt was to blame. Once you see your child wake up vomiting and lethargic and it leads to brain surgery, you will always associate those symptoms with brain surgery. No matter how many times the doctor tells you it's just a virus or it's common for kids in school - it doesn't matter. The memories of those symptoms leading to something serious are impossible to shake. So, with how often Avery has been sick over the last few months, we are constantly guessing what the reason is, and hold our breath each day to see what shape she'll be in. I started marking sick days on the calendar, and we are currently in our longest streak - one full week - (knock on wood) since July. There was so much going on in our lives in the week leading up to Lucy's arrival, but Avery being sick was the worst. Leaving her to go to the hospital was so hard, and thankfully nothing serious ever happened.
In addition to Avery's touch-and-go health, we have dealt with several other things. While I don't want to go into all of them, each one has challenged us in every way possible and taught me (if I didn't know it already), that we really can handle anything. I keep thinking that if one more thing happens to us, I'm going to fall apart, but I know deep down that I will not. Life keeps handing us challenges, and we keep dealing with them as they come. And we know it can be worse, so that's always in the back of our minds.
One of those things was Lucy's illness last week. When we brought her home, all perfect and healthy, we never imagined we'd be back in the hospital with her just two weeks later. But that's where we ended up last Tuesday night, after a long day of her acting sick, and eventually her fever went up to 103. We assumed she had caught it from her sister, who had become a walking germinator. We were warned that because of Lucy's age, she'd have to be tested for everything and be admitted. While we aren't strangers to watching our baby go through spinal taps and have blood drawn, it's still very painful to watch. We were told that the protocol for a newborn with a fever is all these nasty tests, plus putting them on proactive antibiotics. Which - sidenote - was NOT the case three and a half years ago when we brought Avery into the ER with a fever at 7 weeks of age. And she had had brain surgery with a leaking incision! We are very angry about learning this "protocol," because if Avery had received proactive antibiotics, she may have never developed meningitis, which is why she's going through all of her neurological issues today. (We have definitely stored that information for use later.)
Anyway, we found ourselves bunking at the hospital once again, only for poor Lucy this time. We had made plans for what we'd do with Lucy whenever Avery is in the hospital, but didn't really plan for the other way around. We haven't really told many people until now, but the final diagnosis was rhino-enterovirus that spread to Lucy's spinal fluid, which made it a viral meningitis. When I heard the doctor say this, I turned white. The word, 'meningitis,' is a four-letter word in our house. John wasn't at the hospital at the time, so I had to process this alone, and I proceeded to ask the doctor one. million. questions. She assured me that this was a totally different kind of meningitis than Avery's. It's actually the least serious, and they have to call it meningitis simply because where the virus spread to. Newborn's immune systems are underdeveloped, so they can't contain a virus like ours can. They assured us it's not uncommon, and very easy for her to get. But still, we were shocked and felt extremely guilty. How the hell can we end up with both our kids having a form of meningitis? We may have a cluttered house, but we sanitize, we wash our hands - we aren't dirty! After the doctors assured us over and over that we can't blame ourselves, we still do, but that's part of being a parent. Luckily, Lucy made it through her stay with minimal issues, and we were discharged two days later. I hope that was her last hospital stay. And Avery was happy to see her sissy home again, even though it meant that I follow her around 24/7 with sanitizing wipes.
We had also found out on the day that Lucy was born that my Grandpa Johnson was diagnosed with colon cancer. It had spread to other organs, and he was put on chemo pretty quickly. The day we came home from Lucy's hospital stay last week, we sadly learned that he had taken a turn for the worse. I was able to be with my family over the weekend and see him one last time, but he peacefully passed away yesterday. Our family won't be the same without him. He was a great guy, and I'm lucky to have been able to call him my grandpa. Your "Annabelle" will miss you, Grandpa.
John and I look at each other a lot lately and know what each other is thinking; "what the hell?" - but like I said, we just keep on going. While these events are the main issues, we have had many other things working against us lately, and testing our strength. I'm proud of us, but also hope that we are done being tested for a long time. I used to wish for a crystal ball, but lately, I don't really want to know what's around the corner. I will just know that we will deal with it and take one day at a time. I never thought I'd accept that cliche, but I don't really have a choice! For today, I'm grateful that we reached one week of Avery being healthy and she's even eating like a horse. Lucy is growing and back to healthy too. The sun is out. Not thinking beyond those things.
Tuesday, August 27, 2013
Keep Calm and Be Brave
"Keep Calm and Be Brave" was the line I thought appropriate for our team, "Avery's Bravery" at the Hydrocephalus Association's Detroit Walk this past weekend. I came across the event about a month ago, and couldn't pass it up, even though our free time is running on empty these days. We've always tried to stay involved in the organizations related to Avery's disorders, whether it be her eyes or brain, and doing so puts some positivity on a negative situation. Plus, feeling part of a community of other families dealing with these issues is so important. For it being a last-minute decision, the walk turned out great. We raised $365 in four weeks (with minimal "soliciting" of friends and family), so I'm sure next year we can do so much more...plus make those fun team t-shirts I wanted to have so bad :) I really appreciate all the donations we received, and for our other team members who joined us to walk. Hydrocephalus Association is the largest Hydro NPO in the world and raises money for research toward the advancement and improvement of shunts, and coming up with better solutions for this disorder. For how common and serious a disorder it is, there haven't been major strides in how it is treated, which is why patients like our brave one end up in the hospital so often with malfunctions.
It also came in perfect timing, as Avery's wound is still new from her latest surgery two weeks ago, and our emotional wounds gave us even more motivation to help this cause. That day was another scary one turned into a surgery - number 21. It's hard to believe that my poor baby has gone through that many surgeries, not to mention countless times under anesthesia, and radiation from CT scans and x-rays. I wish I could say it gets easier, but it just doesn't. The hardest part for us now is Avery still cannot communicate well when "it hurts," and we can't make her understand that everything is going to be okay. I always wonder what she's thinking when she gets sick like that. She has to be scared as she's in quite a bit of pain, and looks to us to make it go away, when we just can't. I'm comforted by her resilience, but so sad that she has to go through this so often. This year has been so hard on her, and she so deserves a very long stretch of time without surgery. And I'll say it, John and I deserve a break too. Our lives are so unpredictable and full of worry, and I'm ready for the rest of this year (at least!) to be healthy and surgery-free. For one last time I'm going to get my infection worries off my chest. I figure if I talk about it enough out loud, it won't happen. I am sure if I've talked to you in the last two weeks, you've heard me talk about it! The surgeon and his staff told us the infection rate has been high this summer, and each time Avery's opened up for a surgery like this, she's thrown into that mix, and the risk exists for up to 6 months after surgery. The only thing we were told to do was keep the incision area clean and keep her hands clean. Everything else is out of our control. So I took that advice very seriously - probably too seriously - and wash her, plus everything else that could potentially infect her head, often. I know that I shouldn't stress so much about it, as most of it is out of my control, but the reality of a shunt infection scares me so badly. If it happens, the doctors have to remove the whole shunt (which runs from her brain down to her abdomen), then temporarily drain the fluid externally into a bag at the hospital bed. Then it's two weeks or so of IV antibiotics, followed by installing a brand new shunt. And that's just if everything goes as planned. Pretty much one of my worst nightmares.
However, my goal is to stop dwelling on what I cannot control, because that's the only way to get through all of this: minimize worrying, brave up, and literally live one day at a time. We never know what the next day will bring us, so best not to run the list of what could happen. Avery is brave, so there is no excuse for me not to be. We are learning more and more each time what signs to look for, and how to "read" our daughter. At times, I probably over-read her, like yesterday, when she spent the whole morning crying for no particular reason, and nothing could console her. However, she was eating and not throwing up, so my experience told me it probably wasn't her shunt. Regardless, I needed to rule out the benign stuff, and just in case, had her checked out for something like a UTI or virus. She doesn't appear to have either, so that behavior is a mystery still. The constant guessing game does get tiring, but we can't take any sign of illness for granted. Our first reaction is never "she's just being a three-year-old," or "she's probably just coming down with a cold," but we hope each time that this is the case. 99% of the time, it's been her shunt, so we go off our previous experience. I am looking forward to the day when she can communicate better with us so it's less guessing. One of her therapists pointed out recently that with Avery's delays, it often feels like having a one-year-old for three years. Which is so true. There are days I love this because her "baby" years are being extended, along with all the good things that go with them. But that also gets hard, worrisome, and frankly, very old, especially when it comes to communicating her needs. But, we're working on that. One day at a time. And she will get there.
Although the worry of our situation can often be debilitating, I need to focus on the positive as well as get geared up for Baby #2, who is coming in (no sooner than, we hope!) ONE MONTH. Yikes! Nesting has fully set in, and my poor husband is working tirelessly on our never-ending Project: Finish Basement/De-Clutter House of Toys. It has been hard to focus on (and be genuinely excited for) the impending arrival with everything else going on, but we've managed to sneak in some baby shopping trips and finishing up the nursery. And my heart melts when every time I ask Avery whose room that is, she says, "sissy." We are very excited to add another little girl to our family, and we pray every day that she is healthy, healthy, and....healthy. But, if there is an issue, we will get through it, because we always have. We knew we were taking on somewhat of a risk in having more children, but we knew we wanted to give Avery a sibling, and are relying on faith and hope that everything will be okay, no matter what. As the date gets closer, I am getting more emotional about sharing my time across two children, which I hear is normal for second-time moms. I probably won't understand until that baby gets here how it will all work out, but I'm pretty sure all the moms I know figured it out. I will admit, I'm scared to death about having a second child at home when Avery's in the hospital, but again, I know it will work out. There are days when I feel like just having Avery is like having triplets, between all the appointments, at-home care, therapy, insurance and other paperwork, and the setbacks that make our lives stand still for days at a time. So, hopefully having her first will make having a "typical" child now seem like a breeze. Hopefully. And for those of you who don't know, I have stopped working (as of Avery's last surgery) for an indefinite amount of time. The decision is the result of many, many factors, but the bottom line is, this is what's best for our family and I'm thankful that we can make it work.
In addition to trying to be positive and present, I'm also trying to be more faithful. I admittedly lost a lot of my faith in God after Avery was born, but I'm trying to get that back. I ask, as I always do, for you to please say a little prayer (or positive thought if you don't pray) for Avery to stay healthy, and for her sister now too. We cannot say how much we are grateful for this from all of our family and friends (and a lot of strangers too). We'll keep you posted on baby 2!
It also came in perfect timing, as Avery's wound is still new from her latest surgery two weeks ago, and our emotional wounds gave us even more motivation to help this cause. That day was another scary one turned into a surgery - number 21. It's hard to believe that my poor baby has gone through that many surgeries, not to mention countless times under anesthesia, and radiation from CT scans and x-rays. I wish I could say it gets easier, but it just doesn't. The hardest part for us now is Avery still cannot communicate well when "it hurts," and we can't make her understand that everything is going to be okay. I always wonder what she's thinking when she gets sick like that. She has to be scared as she's in quite a bit of pain, and looks to us to make it go away, when we just can't. I'm comforted by her resilience, but so sad that she has to go through this so often. This year has been so hard on her, and she so deserves a very long stretch of time without surgery. And I'll say it, John and I deserve a break too. Our lives are so unpredictable and full of worry, and I'm ready for the rest of this year (at least!) to be healthy and surgery-free. For one last time I'm going to get my infection worries off my chest. I figure if I talk about it enough out loud, it won't happen. I am sure if I've talked to you in the last two weeks, you've heard me talk about it! The surgeon and his staff told us the infection rate has been high this summer, and each time Avery's opened up for a surgery like this, she's thrown into that mix, and the risk exists for up to 6 months after surgery. The only thing we were told to do was keep the incision area clean and keep her hands clean. Everything else is out of our control. So I took that advice very seriously - probably too seriously - and wash her, plus everything else that could potentially infect her head, often. I know that I shouldn't stress so much about it, as most of it is out of my control, but the reality of a shunt infection scares me so badly. If it happens, the doctors have to remove the whole shunt (which runs from her brain down to her abdomen), then temporarily drain the fluid externally into a bag at the hospital bed. Then it's two weeks or so of IV antibiotics, followed by installing a brand new shunt. And that's just if everything goes as planned. Pretty much one of my worst nightmares.
 |
| Before surgery |
 |
| Day after surgery |
However, my goal is to stop dwelling on what I cannot control, because that's the only way to get through all of this: minimize worrying, brave up, and literally live one day at a time. We never know what the next day will bring us, so best not to run the list of what could happen. Avery is brave, so there is no excuse for me not to be. We are learning more and more each time what signs to look for, and how to "read" our daughter. At times, I probably over-read her, like yesterday, when she spent the whole morning crying for no particular reason, and nothing could console her. However, she was eating and not throwing up, so my experience told me it probably wasn't her shunt. Regardless, I needed to rule out the benign stuff, and just in case, had her checked out for something like a UTI or virus. She doesn't appear to have either, so that behavior is a mystery still. The constant guessing game does get tiring, but we can't take any sign of illness for granted. Our first reaction is never "she's just being a three-year-old," or "she's probably just coming down with a cold," but we hope each time that this is the case. 99% of the time, it's been her shunt, so we go off our previous experience. I am looking forward to the day when she can communicate better with us so it's less guessing. One of her therapists pointed out recently that with Avery's delays, it often feels like having a one-year-old for three years. Which is so true. There are days I love this because her "baby" years are being extended, along with all the good things that go with them. But that also gets hard, worrisome, and frankly, very old, especially when it comes to communicating her needs. But, we're working on that. One day at a time. And she will get there.
Although the worry of our situation can often be debilitating, I need to focus on the positive as well as get geared up for Baby #2, who is coming in (no sooner than, we hope!) ONE MONTH. Yikes! Nesting has fully set in, and my poor husband is working tirelessly on our never-ending Project: Finish Basement/De-Clutter House of Toys. It has been hard to focus on (and be genuinely excited for) the impending arrival with everything else going on, but we've managed to sneak in some baby shopping trips and finishing up the nursery. And my heart melts when every time I ask Avery whose room that is, she says, "sissy." We are very excited to add another little girl to our family, and we pray every day that she is healthy, healthy, and....healthy. But, if there is an issue, we will get through it, because we always have. We knew we were taking on somewhat of a risk in having more children, but we knew we wanted to give Avery a sibling, and are relying on faith and hope that everything will be okay, no matter what. As the date gets closer, I am getting more emotional about sharing my time across two children, which I hear is normal for second-time moms. I probably won't understand until that baby gets here how it will all work out, but I'm pretty sure all the moms I know figured it out. I will admit, I'm scared to death about having a second child at home when Avery's in the hospital, but again, I know it will work out. There are days when I feel like just having Avery is like having triplets, between all the appointments, at-home care, therapy, insurance and other paperwork, and the setbacks that make our lives stand still for days at a time. So, hopefully having her first will make having a "typical" child now seem like a breeze. Hopefully. And for those of you who don't know, I have stopped working (as of Avery's last surgery) for an indefinite amount of time. The decision is the result of many, many factors, but the bottom line is, this is what's best for our family and I'm thankful that we can make it work.
In addition to trying to be positive and present, I'm also trying to be more faithful. I admittedly lost a lot of my faith in God after Avery was born, but I'm trying to get that back. I ask, as I always do, for you to please say a little prayer (or positive thought if you don't pray) for Avery to stay healthy, and for her sister now too. We cannot say how much we are grateful for this from all of our family and friends (and a lot of strangers too). We'll keep you posted on baby 2!
Saturday, August 3, 2013
Great Glasses Play Day!
August 4th is Great Glasses Play Day... We were asked to post a video interviewing Avery about wearing glasses, but this is our alternative since she can't talk :)
Avery started wearing glasses at 4 months of age.
Her glasses improve her vision from approx. 20:1000 to 20:400, so they are a BIG help!
She has had four different pairs (but we love pearl pink Mira-flex the best!), and two pair of prescription sunglasses.
She's very good about wearing them - and we are very grateful for that!!
Friday, July 26, 2013
Crystal ball
Well, (knocking on wood as I type), things with Avery's brain and eyes have been rather stable since her surgery in May. This is great, yes, but we are still waiting on pins and needles as we know that things so quickly change, and history has proven this over and over. You might urge us to "enjoy the moment," and "maybe things will be good for a long time," and I agree those are true, but as a defense mechanism, I'm always ready and waiting for the next disaster. Avery's right cornea graft has had a defect on it since shortly after it was done in March. It won't seem to go away, and we really can't do anything about it. So if she rubs her eyes or tries to touch them, it makes me incredibly anxious and stressed out. Imagine an eye lash or piece of sand in your eye, and every time you try to rub it, your mom yanks your hand away from your eyes. It's got to be terrible for her, and I hate that. She's very good about listening, but she gets upset now when we tell her, "no rubbing!" and our only solution is to squirt drops in for relief. As this happens every other day or so, I get nervous that the end is coming for that graft. I obsess over how clear they are today versus yesterday, and it gets very stressful.
I often mention my "Peter's mom group;" a group of moms I've met online or through other means, and all our kids have Peter's Anomaly. We've all dealt with the whole gamut - any surgery, complication, infection, or weird side effect that could happen, one of us has gone through. We keep each other sane and I don't know what I'd do without them. But knowing them and their kid's stories reminds me that Avery's condition is so fragile, and in the blink of an eye (literally), she could lose her sight. It's very easy for Avery's retina to detach during surgery, for her glaucoma to spike and cause a load of issues, or for her to get a serious eye infection that could be her eye's demise. Many of the children I know with Peter's only have one working eye, and that good eye may have very poor sight. This is a reality I try not to dwell on, but know is something we may face one day. It's so scary to enjoy the moment when you know that you may be dealing with your child being completely blind one day. I'm sad that I can never truly calm down and enjoy things, because I'm constantly worried about losing everything we've worked so hard for in Avery's vision. I have found myself getting very controlling of how she's taken care of, because the responsibility falls on me if something happened to her eyes. I don't enjoy this, and 'living in the moment' is something I have to work on every single day.
As far as her noggin', things have been great since her shunt revision in May. She was able to move right to her big girl bed, and in her own room. She had been sleeping in her elevated bed in our room since January, so this was a huge relief. (Although waking up with her throughout the night was practice for what's to come in a short time with baby!) She had a couple issues right after surgery, as her body adjusted to the new fluid regulation, but nothing of note for a long time. This is great, but again, we have to keep in mind that another malfunction could be around any corner. The chances of it are too high to ignore, but we try to live our lives as normal as we can. She recently had a cold/flu bug and I was so worried that her immune system would fire up and attack her shunt and her cornea grafts in the process. Which is probably why I've been hovering over this kid more than usual.
So, I've been trying to tackle other pressing issues while we're out of surgery mode. Like her speech, or lack thereof. I'd say that besides her eye and brain health, her speech delay is the next stressor on my list of things to stress about. It's so frustrating for her and for us. We had issues getting her speech therapy this summer, which only adds to the headache. To supplement her speech therapy through the school, we tried to get her into another program through the hospital. They did an evaluation two weeks ago, which was super fun like the rest of her evaluations. They ask me 1,000 questions about what she can and can't do, and ask her to do a bunch of things. She typically needs to warm up to new people, so her stubbornness comes out and she may not perform as well as I know she can. As a mom, I want to defend her and say, "she started saying, 'blue' last week!!" hoping this will bring up her score. Two days later, I got a summary of the evaluation in the mail. The word, "severe" was all over it, and they "strongly advised" therapy twice a week. Which I expect, but it's not easy to see negative things written about your child. Compared to an average three-year-old, Avery is extremely behind in speech. Like 1,194 words to be exact. We do a lot of work to help her speech - from workshops offered through the schools, to books and special flashcards and sign language - everyone close to Avery works hard to get her to talk. Our lives are very over-articulated so she hopefully picks up on language. I know that she's been through an incredible amount of obstacles that attribute to her delay, but that doesn't mean I shouldn't push her. I know she can do it, it's just requiring more time and effort than anyone expected. However, even given the fact that she has mild cerebral palsy following meningitis, is extremely vision impaired, and has been under anesthesia nearly 100 times, our awesome insurance company doesn't believe these are enough to warrant coverage for speech. I just got a call that our insurance denied the request for speech therapy. I know it can be fought, but why should I have to? Don't they realize that moms like me deal with enough crap, and fighting for coverage of something my child obviously needs, is the last thing I want to do? I'm not even getting into the fact that she has issues warranting physical and occupational therapy to be paid for as well. And time lost in getting her therapy is just not good.
On a positive note, we have noticed over the last few weeks Avery being much more interactive with other kids. She normally doesn't notice them, or feels threatened by them, but lately, she's been engaging and very interested in what they're doing. This says great things not only about her vision, but her development. John and I look at each other and smile when this happens, and it's the encouragement we need when other things aren't perfect. She is also attempting to make a sound when you ask her to repeat a word. As I said, "blue," is on this list, so I love to point out anything blue to hear her say it!
Last night, we visited Grammy at her work to check out baby 2 and she looks healthy, (kind of big), and as cute as a fetus can look on ultrasound. :) We're anxious and excited to meet her and know for sure that she's 100% healthy. In the meantime, we're trying to finish our basement to make room for more baby crap, and reminding ourselves what it's like to have a newborn in our home. I have a feeling it will all come back to us very quickly. The fact that we could potentially have a healthy child, is so bizarre to us. We just had a long conversation about how surreal it will be to have the baby handed to us and look into crystal clear, healthy eyes. For our only worries to be normal worries. We know that we can't be totally sure at this point what we will be given, but we can't help but imagine how strange life will be with an "average" baby. That's a whole other conversation, though!
I can only prepare so much, I know, and after that, I just have to pray that things stay stable with Avery's health (at least until November, PLEASE!), and she loves her little sister. I always find myself wishing we had a crystal ball to see what's around the corner for us, but turns out, those don't exist.... But writing down all my thoughts and worries always helps, so thank you for reading!
As always, we appreciate your thoughts and prayers for our little (soon to be big) girl and her health.
I often mention my "Peter's mom group;" a group of moms I've met online or through other means, and all our kids have Peter's Anomaly. We've all dealt with the whole gamut - any surgery, complication, infection, or weird side effect that could happen, one of us has gone through. We keep each other sane and I don't know what I'd do without them. But knowing them and their kid's stories reminds me that Avery's condition is so fragile, and in the blink of an eye (literally), she could lose her sight. It's very easy for Avery's retina to detach during surgery, for her glaucoma to spike and cause a load of issues, or for her to get a serious eye infection that could be her eye's demise. Many of the children I know with Peter's only have one working eye, and that good eye may have very poor sight. This is a reality I try not to dwell on, but know is something we may face one day. It's so scary to enjoy the moment when you know that you may be dealing with your child being completely blind one day. I'm sad that I can never truly calm down and enjoy things, because I'm constantly worried about losing everything we've worked so hard for in Avery's vision. I have found myself getting very controlling of how she's taken care of, because the responsibility falls on me if something happened to her eyes. I don't enjoy this, and 'living in the moment' is something I have to work on every single day.
As far as her noggin', things have been great since her shunt revision in May. She was able to move right to her big girl bed, and in her own room. She had been sleeping in her elevated bed in our room since January, so this was a huge relief. (Although waking up with her throughout the night was practice for what's to come in a short time with baby!) She had a couple issues right after surgery, as her body adjusted to the new fluid regulation, but nothing of note for a long time. This is great, but again, we have to keep in mind that another malfunction could be around any corner. The chances of it are too high to ignore, but we try to live our lives as normal as we can. She recently had a cold/flu bug and I was so worried that her immune system would fire up and attack her shunt and her cornea grafts in the process. Which is probably why I've been hovering over this kid more than usual.
So, I've been trying to tackle other pressing issues while we're out of surgery mode. Like her speech, or lack thereof. I'd say that besides her eye and brain health, her speech delay is the next stressor on my list of things to stress about. It's so frustrating for her and for us. We had issues getting her speech therapy this summer, which only adds to the headache. To supplement her speech therapy through the school, we tried to get her into another program through the hospital. They did an evaluation two weeks ago, which was super fun like the rest of her evaluations. They ask me 1,000 questions about what she can and can't do, and ask her to do a bunch of things. She typically needs to warm up to new people, so her stubbornness comes out and she may not perform as well as I know she can. As a mom, I want to defend her and say, "she started saying, 'blue' last week!!" hoping this will bring up her score. Two days later, I got a summary of the evaluation in the mail. The word, "severe" was all over it, and they "strongly advised" therapy twice a week. Which I expect, but it's not easy to see negative things written about your child. Compared to an average three-year-old, Avery is extremely behind in speech. Like 1,194 words to be exact. We do a lot of work to help her speech - from workshops offered through the schools, to books and special flashcards and sign language - everyone close to Avery works hard to get her to talk. Our lives are very over-articulated so she hopefully picks up on language. I know that she's been through an incredible amount of obstacles that attribute to her delay, but that doesn't mean I shouldn't push her. I know she can do it, it's just requiring more time and effort than anyone expected. However, even given the fact that she has mild cerebral palsy following meningitis, is extremely vision impaired, and has been under anesthesia nearly 100 times, our awesome insurance company doesn't believe these are enough to warrant coverage for speech. I just got a call that our insurance denied the request for speech therapy. I know it can be fought, but why should I have to? Don't they realize that moms like me deal with enough crap, and fighting for coverage of something my child obviously needs, is the last thing I want to do? I'm not even getting into the fact that she has issues warranting physical and occupational therapy to be paid for as well. And time lost in getting her therapy is just not good.
On a positive note, we have noticed over the last few weeks Avery being much more interactive with other kids. She normally doesn't notice them, or feels threatened by them, but lately, she's been engaging and very interested in what they're doing. This says great things not only about her vision, but her development. John and I look at each other and smile when this happens, and it's the encouragement we need when other things aren't perfect. She is also attempting to make a sound when you ask her to repeat a word. As I said, "blue," is on this list, so I love to point out anything blue to hear her say it!
Last night, we visited Grammy at her work to check out baby 2 and she looks healthy, (kind of big), and as cute as a fetus can look on ultrasound. :) We're anxious and excited to meet her and know for sure that she's 100% healthy. In the meantime, we're trying to finish our basement to make room for more baby crap, and reminding ourselves what it's like to have a newborn in our home. I have a feeling it will all come back to us very quickly. The fact that we could potentially have a healthy child, is so bizarre to us. We just had a long conversation about how surreal it will be to have the baby handed to us and look into crystal clear, healthy eyes. For our only worries to be normal worries. We know that we can't be totally sure at this point what we will be given, but we can't help but imagine how strange life will be with an "average" baby. That's a whole other conversation, though!
I can only prepare so much, I know, and after that, I just have to pray that things stay stable with Avery's health (at least until November, PLEASE!), and she loves her little sister. I always find myself wishing we had a crystal ball to see what's around the corner for us, but turns out, those don't exist.... But writing down all my thoughts and worries always helps, so thank you for reading!
As always, we appreciate your thoughts and prayers for our little (soon to be big) girl and her health.
Wednesday, May 22, 2013
Well, that was fun!
Thank you to everyone who prayed for and sent well wishes to Avery these last couple of days. It's been chaotic and difficult, but I'm glad to say we're home after just one night in the hospital and Avery is well again.
When we woke up Tuesday morning to the sound of Avery getting sick, neither John or I imagined where we'd end up by the end of the day. She's had these intermittent episodes since January - it is why we scheduled the shunt surgery on June 12th - but her body had it's own agenda, as usual. I feel guilty that we didn't schedule her surgery sooner, or that I didn't take her into the hospital right away yesterday, but we see this kind of "episode" so often lately, that we sometimes second-guess whether it's going to pass. Unfortunately, yesterday's was the most serious since December 2011, when she first had to have her shunt placed. When the pressure from extra fluid builds up, she gets extremely lethargic, cannot lift her head off the pillow, is very irritable and sensitive to any movement. If she does try to move a lot or take a drink of water, she vomits. For anyone that knows Avery, she's never down and out like this, so it's unsettling to see. This typically goes on for 3-5 hours, and then she magically snaps out of it and is back to normal. Her body usually just needs to regulate the fluid that built up in her head, and get rid of the massive headache that it causes. This time, her shunt had completely stopped working (which we found out later), so she did not recover. A few weeks ago, her doctor warned us of this happening, but there was no way to tell how soon it would, so scheduling surgery for June wasn't that odd.
By 2:00pm, there was no improvement, and I called the doctor's office and was told to bring her down to Children's. Luckily, my mom had just come over to help me out, and John would have to meet us down at the hospital. I instinctively packed an overnight bag because I knew where this was going. When we got down to the hospital, neurosurgery had anticipated the inevitable as well, and sent us for a CT scan and some x-rays to get current images of her brain. She threw up twice in the process of getting these, which panicked me even more. She hadn't kept any fluid down yet, which is totally unnerving for any mom. I was so thankful my mom had come, because someone was there to hold her hand while she got her scans - my pregnant self had to wait outside the door, listening to Avery cry. She was so miserable and it broke my heart. This, and the fact that both the x-ray tech and the CT tech asked me, "when was her last shunt revision?" as if I'm a pro at these. And the sad thing is, they are used to asking shunt patients this question because multiple shunt revisions on one child are so common. The aforementioned "club" I was dreading.
Then, followed the worst test ever. It's one we've experienced three previous times, but it's always awful to watch. They have to draw fluid off the valve (to test the pressure, and to get rid of some of the fluid and provide relief) and they do so by inserting a needle right into her head with tubing and a syringe attached. The first time she had this procedure, it was a spinal tap when she was a newborn, being diagnosed with meningitis. I wasn't in a good place at that time and couldn't watch, so I left John to do it alone, which is something I've always regretted. The first time I witnessed this test was a little over a year ago, before her shunt was placed and she was just as sick as she was yesterday. It's quite upsetting, but we know it's the only option. This is when you have to put your big girl pants on, hold your daughter's hand and calmly talk her through it. What upset me just as much as seeing my child screaming on that table, was knowing my own mom was sitting right behind me, watching this for the first time. My mom is aware of all Avery goes through and there for us all the way, but normally doesn't see the really bad stuff firsthand. And I know she worries about me, so I was sad that she had to see that.
They were not successful in drawing any fluid off her valve, which meant it was not functioning. So, they called her neurosurgeon and boarded Avery for surgery in the next hour, at 6:30pm. They are an amazing team there, and they always make us feel very confident in them taking care of her, despite how quickly the decision had to be made. They know of our past experience with Avery's first brain surgeon and her horrible infection, so they do what they can to reassure us, but they still have to say, "with any surgery, there's a chance for infection." The PA told us we have every right to be scared. This is brain surgery. Although we've gone through it many times, it's still hard to wrap your head (no pun intended) around the fact that your baby will have their brain operated on, and be safely handed back to you afterward. This one was the most rushed too, so we had to make sure we explained her most recent eye precautions to the rest of the OR team checking us in. The surgery was very quick. Just as he suspected, scar tissue had formed around the tubing that drains fluid from her ventricles, so he removed it and replaced it with new tubing. This is the sucky part. Every time this is done, your body treats the new part as a new foreign object, and basically wants to attack it. Great for a cut or common cold, but bad for shunts. Then the thing clogs again, and you're back getting another shunt revision, and so on, and so on....
He did explain to us that there's another possible option if this keeps happening. It's a different kind of shunt, and the risk of failure is much lower. The problem is, she has to be a little bit older (closer to 4), and they have to do some tests to see if she would be a candidate. And even then, it still is not guaranteed to work. Nothing is, I suppose. But it's an option, and we'll cross that bridge when we get there. We went up to her room (private, thanks to being a squeaky...annoying...begging wheel), and waited for our little trooper to come out. Remarkably, considering the pain associated with this surgery, she had a pretty great night, only getting up a couple times. I think she was more annoyed with the IV, bandages and wires all over her. I always dread staying overnight at the hospital, and even though John insisted I go home and sleep while he stayed with her, I couldn't leave my baby. She is now old enough for a 'big girl hospital bed,' so I was able to sleep right in the bed with her. Although the constant interruptions from nurses and beeping of her monitors sucks, I have to admit it was one of the easier times I've had staying.
By 3 am, she was trying to talk and get up. She slowly but surely came "back to Avery," a sleepier version of Avery, but nothing like the day before. There is nothing that makes us happier than seeing this transformation. (See pics below - she also was fascinated by the little red light on the pulse monitor attached to her toe, and kept looking at it, saying, "off," as in "turn off the light"). They needed to monitor her numbers for awhile today, but she was good to be discharged by 3:30pm. When neurosurgery went over the instructions for her incision, it was the most upset I felt for two days. The memory of what we went through with her first surgery's infection will stay with me forever, and I'm so scared of it happening again. It's hard to believe they let you take home this raw, brand new head incision, and wash it and lay it on stuff that's not sterile, and it freaks me out to no end. But, they assured us it was okay and reminded us of what to watch out for. The incision is bigger than we expected, and they took off more hair than they expected, but it is what it is.
So, we're back at home and trying to recover. I have to admit, this all would probably be easier if I weren't pregnant, but I am! A thought kept popping into my head (rather, it kicked me in the tummy) over the last two days: "you have a second one coming." You will soon be doing all of this with two. Again, cross that bridge later...I just hope and pray that we are not back for her brain anytime soon... And hey, now we can cross this surgery off our list from June and maybe have an easier summer. Hopefully.
When we woke up Tuesday morning to the sound of Avery getting sick, neither John or I imagined where we'd end up by the end of the day. She's had these intermittent episodes since January - it is why we scheduled the shunt surgery on June 12th - but her body had it's own agenda, as usual. I feel guilty that we didn't schedule her surgery sooner, or that I didn't take her into the hospital right away yesterday, but we see this kind of "episode" so often lately, that we sometimes second-guess whether it's going to pass. Unfortunately, yesterday's was the most serious since December 2011, when she first had to have her shunt placed. When the pressure from extra fluid builds up, she gets extremely lethargic, cannot lift her head off the pillow, is very irritable and sensitive to any movement. If she does try to move a lot or take a drink of water, she vomits. For anyone that knows Avery, she's never down and out like this, so it's unsettling to see. This typically goes on for 3-5 hours, and then she magically snaps out of it and is back to normal. Her body usually just needs to regulate the fluid that built up in her head, and get rid of the massive headache that it causes. This time, her shunt had completely stopped working (which we found out later), so she did not recover. A few weeks ago, her doctor warned us of this happening, but there was no way to tell how soon it would, so scheduling surgery for June wasn't that odd.
By 2:00pm, there was no improvement, and I called the doctor's office and was told to bring her down to Children's. Luckily, my mom had just come over to help me out, and John would have to meet us down at the hospital. I instinctively packed an overnight bag because I knew where this was going. When we got down to the hospital, neurosurgery had anticipated the inevitable as well, and sent us for a CT scan and some x-rays to get current images of her brain. She threw up twice in the process of getting these, which panicked me even more. She hadn't kept any fluid down yet, which is totally unnerving for any mom. I was so thankful my mom had come, because someone was there to hold her hand while she got her scans - my pregnant self had to wait outside the door, listening to Avery cry. She was so miserable and it broke my heart. This, and the fact that both the x-ray tech and the CT tech asked me, "when was her last shunt revision?" as if I'm a pro at these. And the sad thing is, they are used to asking shunt patients this question because multiple shunt revisions on one child are so common. The aforementioned "club" I was dreading.
Then, followed the worst test ever. It's one we've experienced three previous times, but it's always awful to watch. They have to draw fluid off the valve (to test the pressure, and to get rid of some of the fluid and provide relief) and they do so by inserting a needle right into her head with tubing and a syringe attached. The first time she had this procedure, it was a spinal tap when she was a newborn, being diagnosed with meningitis. I wasn't in a good place at that time and couldn't watch, so I left John to do it alone, which is something I've always regretted. The first time I witnessed this test was a little over a year ago, before her shunt was placed and she was just as sick as she was yesterday. It's quite upsetting, but we know it's the only option. This is when you have to put your big girl pants on, hold your daughter's hand and calmly talk her through it. What upset me just as much as seeing my child screaming on that table, was knowing my own mom was sitting right behind me, watching this for the first time. My mom is aware of all Avery goes through and there for us all the way, but normally doesn't see the really bad stuff firsthand. And I know she worries about me, so I was sad that she had to see that.
They were not successful in drawing any fluid off her valve, which meant it was not functioning. So, they called her neurosurgeon and boarded Avery for surgery in the next hour, at 6:30pm. They are an amazing team there, and they always make us feel very confident in them taking care of her, despite how quickly the decision had to be made. They know of our past experience with Avery's first brain surgeon and her horrible infection, so they do what they can to reassure us, but they still have to say, "with any surgery, there's a chance for infection." The PA told us we have every right to be scared. This is brain surgery. Although we've gone through it many times, it's still hard to wrap your head (no pun intended) around the fact that your baby will have their brain operated on, and be safely handed back to you afterward. This one was the most rushed too, so we had to make sure we explained her most recent eye precautions to the rest of the OR team checking us in. The surgery was very quick. Just as he suspected, scar tissue had formed around the tubing that drains fluid from her ventricles, so he removed it and replaced it with new tubing. This is the sucky part. Every time this is done, your body treats the new part as a new foreign object, and basically wants to attack it. Great for a cut or common cold, but bad for shunts. Then the thing clogs again, and you're back getting another shunt revision, and so on, and so on....
He did explain to us that there's another possible option if this keeps happening. It's a different kind of shunt, and the risk of failure is much lower. The problem is, she has to be a little bit older (closer to 4), and they have to do some tests to see if she would be a candidate. And even then, it still is not guaranteed to work. Nothing is, I suppose. But it's an option, and we'll cross that bridge when we get there. We went up to her room (private, thanks to being a squeaky...annoying...begging wheel), and waited for our little trooper to come out. Remarkably, considering the pain associated with this surgery, she had a pretty great night, only getting up a couple times. I think she was more annoyed with the IV, bandages and wires all over her. I always dread staying overnight at the hospital, and even though John insisted I go home and sleep while he stayed with her, I couldn't leave my baby. She is now old enough for a 'big girl hospital bed,' so I was able to sleep right in the bed with her. Although the constant interruptions from nurses and beeping of her monitors sucks, I have to admit it was one of the easier times I've had staying.
By 3 am, she was trying to talk and get up. She slowly but surely came "back to Avery," a sleepier version of Avery, but nothing like the day before. There is nothing that makes us happier than seeing this transformation. (See pics below - she also was fascinated by the little red light on the pulse monitor attached to her toe, and kept looking at it, saying, "off," as in "turn off the light"). They needed to monitor her numbers for awhile today, but she was good to be discharged by 3:30pm. When neurosurgery went over the instructions for her incision, it was the most upset I felt for two days. The memory of what we went through with her first surgery's infection will stay with me forever, and I'm so scared of it happening again. It's hard to believe they let you take home this raw, brand new head incision, and wash it and lay it on stuff that's not sterile, and it freaks me out to no end. But, they assured us it was okay and reminded us of what to watch out for. The incision is bigger than we expected, and they took off more hair than they expected, but it is what it is.
So, we're back at home and trying to recover. I have to admit, this all would probably be easier if I weren't pregnant, but I am! A thought kept popping into my head (rather, it kicked me in the tummy) over the last two days: "you have a second one coming." You will soon be doing all of this with two. Again, cross that bridge later...I just hope and pray that we are not back for her brain anytime soon... And hey, now we can cross this surgery off our list from June and maybe have an easier summer. Hopefully.
Friday, May 10, 2013
"Make your mess your message"
It is always easier to have perspective when things are going well, at least for me. I wish I could keep my perspective 24/7, but it does slip away when the bad news piles on. I think it would for any parent. We had a positive report at Avery's surgery this week, and during our time in the hospital Thursday, I experienced ups and downs as far as my perspective.
When we arrived, I was sitting next to a mother in the waiting room who was accompanied by a social worker. Through some "casual eavesdropping," we figured out that her daughter was in for surgery, and she and the father were arguing over who was taking her home. It got so bad at one point, that the police were called into the recovery area of the OR. I thought how lucky I am to be in a healthy, loving marriage instead of that situation. If John and I didn't work as a team and support each other during all of this, how much worse would life be?
Every time we take Avery down to Children's, I can't help but look around at all the other patients and their parents. Seeing a sick child who is obviously going through chemotherapy is enough to make you forget all of your own troubles. This sure gives me my perspective back. For as much as Avery has gone through, nothing compares to a terminal illness and the fear of losing your child... or to actually lose your child. Nothing. That is the most awful human experience, and every trial and tribulation I go through should pale in comparison. We only saw a glimpse of this once, when Avery had meningitis, and I never want that feeling again. Yesterday, I thought about how I look, jealously, at the families in pre-op who are there for pretty simple procedures, such as ear tubes. This is a very common surgery for kids, and in most cases you can tell this is their first surgery. And probably their last. They look terrified as the anesthesia doctor explains how they will put their child to sleep, and they fumble as they try to put the hospital gown on their child for the first time. They have an entourage of 10 family members outside (because this isn't routine for them), waiting to give the child balloons, flowers and new toys. I always think, "I wish that was my situation." But, I remind myself (or John reminds me) that for them, this is the worst, scary thing they've gone through. And, more importantly, we are an "ear tube surgery" for those families dealing with cancer. I bet there have been times when a mom has looked at me and thought, "I wish that was my situation," as I deal with eye surgery and she deals with chemotherapy or a bone marrow transplant. It is never easy to see your child go through pain, but there are varying degrees of that pain. For the lucky ones, the worst is comforting a sad child who didn't make the soccer team. For others, it's hearing that they've been diagnosed with a serious illness.
I tried to take this perspective with me as we were called back into pre-op, but my mind started going to the bad place as Avery's mood went from content to super cranky. I have found that her mood directly impacts mine, and seeing her cry from being hungry and aggravated was too much for me at that moment. Normally, she does so well with surgery days. Her doctor isn't able to do surgery before 1pm, so she has to fast all day, but never gets too upset. Sure, she hates having her blood pressure taken, and doesn't like the doctor listening to her heart, but we've always been happy that the crying is at a minimum. Yesterday, though, she was really upset, and it broke my heart. I usually carry her into the OR, but since I've had a bad cold, John went this time. I stayed back and cried a little, worried about what the doctor would find with the right transplant, and if her pressures would be elevated.
Shortly after she went back, a nurse came out and told us that we had to sign another consent form because Dr. Dunn needed to do a (surprise) schleral patch graft, due to an "opening" in her right eye. Huh? This was definitely out of left field, and the nurse had little information, so we signed the paper because we trust him. I just stared into space, pissed off, and waited for the surgery to finish. It took almost two hours, which was extremely unnerving. He came out and explained what happened. It was much less serious than that nurse made it to be. To make a long story short, a glaucoma tube she has had in her left eye for years was poking through the surface of her eye and he had to put a graft over it. Not ideal, but certainly fixable. He also decided to do the lid closure on the right himself (without the plastic surgeon). Both of her pressures were good, which is fantastic, and the rough, dry patch from last week even looked better. He said it left behind a slight haze, which may or may not go away, but it's not going to fail the graft at this point. Her Ophthalmologist also was there, and everything looked healthy from his end too. Overall, this is a great report. Although she had procedures done in both eyes, the big picture is positive.
When we got her in recovery, both of her eyes were bleeding pretty bad, which isn't something we've seen very often. It's normal, though. Within a few hours, she was home and back to Avery - happy to eat a PB&J. It was nice to call our parents with good news - mainly her good pressures and the surface healing on the right transplant.
This morning, right after I fought Avery to get drops in her swollen, sore eyes, I saw a story on the news that really touched me. It was about a mother whose (while she was pregnant with her second baby) 2-year-old daughter was diagnosed with leukemia. She was so shocked at the news that she went into pre-term labor. However, she dedicated herself to healing her daughter, and saw her through a bone marrow transplant last year. This is the type of situation that makes me very grateful for what I have. I took away the best line from that mom; "make your mess your message."
That's it for now. I didn't intend on writing an entry every week, it's just worked out that way lately! As always, thank you for the love and support!!
When we arrived, I was sitting next to a mother in the waiting room who was accompanied by a social worker. Through some "casual eavesdropping," we figured out that her daughter was in for surgery, and she and the father were arguing over who was taking her home. It got so bad at one point, that the police were called into the recovery area of the OR. I thought how lucky I am to be in a healthy, loving marriage instead of that situation. If John and I didn't work as a team and support each other during all of this, how much worse would life be?
Every time we take Avery down to Children's, I can't help but look around at all the other patients and their parents. Seeing a sick child who is obviously going through chemotherapy is enough to make you forget all of your own troubles. This sure gives me my perspective back. For as much as Avery has gone through, nothing compares to a terminal illness and the fear of losing your child... or to actually lose your child. Nothing. That is the most awful human experience, and every trial and tribulation I go through should pale in comparison. We only saw a glimpse of this once, when Avery had meningitis, and I never want that feeling again. Yesterday, I thought about how I look, jealously, at the families in pre-op who are there for pretty simple procedures, such as ear tubes. This is a very common surgery for kids, and in most cases you can tell this is their first surgery. And probably their last. They look terrified as the anesthesia doctor explains how they will put their child to sleep, and they fumble as they try to put the hospital gown on their child for the first time. They have an entourage of 10 family members outside (because this isn't routine for them), waiting to give the child balloons, flowers and new toys. I always think, "I wish that was my situation." But, I remind myself (or John reminds me) that for them, this is the worst, scary thing they've gone through. And, more importantly, we are an "ear tube surgery" for those families dealing with cancer. I bet there have been times when a mom has looked at me and thought, "I wish that was my situation," as I deal with eye surgery and she deals with chemotherapy or a bone marrow transplant. It is never easy to see your child go through pain, but there are varying degrees of that pain. For the lucky ones, the worst is comforting a sad child who didn't make the soccer team. For others, it's hearing that they've been diagnosed with a serious illness.
I tried to take this perspective with me as we were called back into pre-op, but my mind started going to the bad place as Avery's mood went from content to super cranky. I have found that her mood directly impacts mine, and seeing her cry from being hungry and aggravated was too much for me at that moment. Normally, she does so well with surgery days. Her doctor isn't able to do surgery before 1pm, so she has to fast all day, but never gets too upset. Sure, she hates having her blood pressure taken, and doesn't like the doctor listening to her heart, but we've always been happy that the crying is at a minimum. Yesterday, though, she was really upset, and it broke my heart. I usually carry her into the OR, but since I've had a bad cold, John went this time. I stayed back and cried a little, worried about what the doctor would find with the right transplant, and if her pressures would be elevated.
Shortly after she went back, a nurse came out and told us that we had to sign another consent form because Dr. Dunn needed to do a (surprise) schleral patch graft, due to an "opening" in her right eye. Huh? This was definitely out of left field, and the nurse had little information, so we signed the paper because we trust him. I just stared into space, pissed off, and waited for the surgery to finish. It took almost two hours, which was extremely unnerving. He came out and explained what happened. It was much less serious than that nurse made it to be. To make a long story short, a glaucoma tube she has had in her left eye for years was poking through the surface of her eye and he had to put a graft over it. Not ideal, but certainly fixable. He also decided to do the lid closure on the right himself (without the plastic surgeon). Both of her pressures were good, which is fantastic, and the rough, dry patch from last week even looked better. He said it left behind a slight haze, which may or may not go away, but it's not going to fail the graft at this point. Her Ophthalmologist also was there, and everything looked healthy from his end too. Overall, this is a great report. Although she had procedures done in both eyes, the big picture is positive.
When we got her in recovery, both of her eyes were bleeding pretty bad, which isn't something we've seen very often. It's normal, though. Within a few hours, she was home and back to Avery - happy to eat a PB&J. It was nice to call our parents with good news - mainly her good pressures and the surface healing on the right transplant.
This morning, right after I fought Avery to get drops in her swollen, sore eyes, I saw a story on the news that really touched me. It was about a mother whose (while she was pregnant with her second baby) 2-year-old daughter was diagnosed with leukemia. She was so shocked at the news that she went into pre-term labor. However, she dedicated herself to healing her daughter, and saw her through a bone marrow transplant last year. This is the type of situation that makes me very grateful for what I have. I took away the best line from that mom; "make your mess your message."
That's it for now. I didn't intend on writing an entry every week, it's just worked out that way lately! As always, thank you for the love and support!!
Friday, May 3, 2013
It's always something
The last thing I feel like doing right now is writing a blog entry, but I promised myself that I'd write things when they are fresh in my mind so I can look back on this years from now and know how I really felt. If I was telling someone this stuff in person, I'd probably sugar-coat the situation so they wouldn't think I was being negative mommy, or too pessimistic about it. I've learned that some people don't want to hear how I really feel about this stuff...maybe because they don't know how to respond. Or maybe it's me, and I don't want to seem too negative. But that's what this blog is for. To be real!
I just shared that Avery has to have a shunt revision, and we scheduled that for June 12th. I am still dealing with all that comes with that surgery - shaving her beautiful blonde hair, recovery, her missing the last day of pre-school, and how it could potentially open a can of worms for new issues. So, to add insult to injury, last night, John had noticed a discolored patch on her right cornea transplant, and I was so scared to look. Maybe if I don't look, it won't exist. So this morning, we had our weekly appointment with her cornea doctor and her 3-year well visit at the pediatrician. I brought it up to Dr. Dunn, and unfortunately, it does exist. It is a dry, rough patch right in the middle of her newest transplant. We've had these on previous transplants, and in the past, this has led to scarring of the graft and inevitably, failure. These patches form because Avery doesn't close her eyes all the way when she sleeps, and she rarely blinks. To combat this, he puts in those tarsorophies (partially sewing her eye lids closed), and at home, we have to pay attention to them opening up. Which they always do... So then we have to put in gobs of ointment to keep the surface of her eye moist. Apparently this wasn't enough and within a week, this dry patch formed.
I know this doctor very well by now. We've known him for three years and he sees Avery every week. So I know when he's really concerned and disappointed. I've seen this on his face too many times - disappointment. He told me that he wants to get an Ocular Plastic Surgeon to more permanently fuse her eye lids together, and soon. It's my understanding she'd still have a small opening to see out of, but this is another awful procedure that puts a giant pit in my stomach. Having someone fuse my child's lids shut, when they've already been sewn closed so many times makes me worry how beat up her lids will be after all of this. And will it even work? If this dry patch persists, that graft will fail. And then what? We start to talk about final options, or worse, give up? We are getting closer and closer to the end of the road each time something bad happens to her eyes.
So, like always, this new development causes scheduling problems. She's currently scheduled to have an EUA on March 23 with both Dr. Dunn and her main ophthalmologist, Dr. Roarty (getting these two in the same OR at the same time is not an easy task, so we were looking forward to this). If her pressure is still up (glaucoma), Dr. Roarty would be best to advise us on what to do. As of this morning, Dr. Dunn wants to see her under anesthesia sooner, because he's also worried she may have some stitches loose in her transplant. So, we are going under next week, and probably not with Dr. Roarty joining him. And when the hell are we supposed to do the plastic surgery with this new guy? It's not like we've never faced multiple surgeries in one month, but that doesn't make it easier. As I leave the office, it feels like an elephant is on my shoulders. There is so much to think about and process, and get in order. I call John first and cry. "I can't do this anymore." I then drove across town to her pediatrician visit. I caught myself glaring at another mom across the waiting room. She had two little boys with her, and I assumed that they are totally healthy and only there for silly shots. "Does she realize how lucky she is???" Ok, she's probably a nice mom, so stop that, Ann. We are called back and find out Avery doesn't need shots today (yea!), and that she's finally on the curve for weight (3rd percentile)... but still not even on the curve for height. But she "appears to be well-fed," so no worries. I can't really worry about how petite Avery is right now.
It's one of those days when I feel afraid of my own life. This is the first day in awhile when I'm pretty hopeless. How can I keep going on hope alone, when barriers like this keep coming up and making success with anything seem out of reach? I'm so sad for Avery and the challenges she's up against. How real it is that she may not have vision someday, and she may endure surgery after surgery for her whole life. There.is.no.end.in.sight. Like I've explained before, this isn't the type of situation (with her eyes or her brain) when surgery "fixes" the problem for long. There is always something that could easily go wrong and ruin everything that we've worked so hard for. And I can't help but feel like we dropped the ball, didn't do enough, didn't take good enough care of her.
It's hard to feel part of the spinning world as a parent of a child with medical problems or special needs, so I'm very lonely. Very few people "get" me, so I confide in very few people. These days, it's my fellow Peter's Anomaly moms (or my therapist...). This is my choice, so not asking anyone to feel bad for me. It just makes sense for me and is easier to talk to someone who has been in my shoes. Even if I've never met them in person. I feel so awful after hearing bad news, and I can't expect anyone to stop their lives and get that. I'm very grateful to have met good friends who have kids with Peter's. I don't know how I'd get through this without them.
I apologize for the downer entry, but this is the point of a blog, not to sugar-coat, so I'm laying it out there. Thank you for your support... I got such a moving response from people after my first two entries, and I really appreciate that.
I just shared that Avery has to have a shunt revision, and we scheduled that for June 12th. I am still dealing with all that comes with that surgery - shaving her beautiful blonde hair, recovery, her missing the last day of pre-school, and how it could potentially open a can of worms for new issues. So, to add insult to injury, last night, John had noticed a discolored patch on her right cornea transplant, and I was so scared to look. Maybe if I don't look, it won't exist. So this morning, we had our weekly appointment with her cornea doctor and her 3-year well visit at the pediatrician. I brought it up to Dr. Dunn, and unfortunately, it does exist. It is a dry, rough patch right in the middle of her newest transplant. We've had these on previous transplants, and in the past, this has led to scarring of the graft and inevitably, failure. These patches form because Avery doesn't close her eyes all the way when she sleeps, and she rarely blinks. To combat this, he puts in those tarsorophies (partially sewing her eye lids closed), and at home, we have to pay attention to them opening up. Which they always do... So then we have to put in gobs of ointment to keep the surface of her eye moist. Apparently this wasn't enough and within a week, this dry patch formed.
I know this doctor very well by now. We've known him for three years and he sees Avery every week. So I know when he's really concerned and disappointed. I've seen this on his face too many times - disappointment. He told me that he wants to get an Ocular Plastic Surgeon to more permanently fuse her eye lids together, and soon. It's my understanding she'd still have a small opening to see out of, but this is another awful procedure that puts a giant pit in my stomach. Having someone fuse my child's lids shut, when they've already been sewn closed so many times makes me worry how beat up her lids will be after all of this. And will it even work? If this dry patch persists, that graft will fail. And then what? We start to talk about final options, or worse, give up? We are getting closer and closer to the end of the road each time something bad happens to her eyes.
So, like always, this new development causes scheduling problems. She's currently scheduled to have an EUA on March 23 with both Dr. Dunn and her main ophthalmologist, Dr. Roarty (getting these two in the same OR at the same time is not an easy task, so we were looking forward to this). If her pressure is still up (glaucoma), Dr. Roarty would be best to advise us on what to do. As of this morning, Dr. Dunn wants to see her under anesthesia sooner, because he's also worried she may have some stitches loose in her transplant. So, we are going under next week, and probably not with Dr. Roarty joining him. And when the hell are we supposed to do the plastic surgery with this new guy? It's not like we've never faced multiple surgeries in one month, but that doesn't make it easier. As I leave the office, it feels like an elephant is on my shoulders. There is so much to think about and process, and get in order. I call John first and cry. "I can't do this anymore." I then drove across town to her pediatrician visit. I caught myself glaring at another mom across the waiting room. She had two little boys with her, and I assumed that they are totally healthy and only there for silly shots. "Does she realize how lucky she is???" Ok, she's probably a nice mom, so stop that, Ann. We are called back and find out Avery doesn't need shots today (yea!), and that she's finally on the curve for weight (3rd percentile)... but still not even on the curve for height. But she "appears to be well-fed," so no worries. I can't really worry about how petite Avery is right now.
It's one of those days when I feel afraid of my own life. This is the first day in awhile when I'm pretty hopeless. How can I keep going on hope alone, when barriers like this keep coming up and making success with anything seem out of reach? I'm so sad for Avery and the challenges she's up against. How real it is that she may not have vision someday, and she may endure surgery after surgery for her whole life. There.is.no.end.in.sight. Like I've explained before, this isn't the type of situation (with her eyes or her brain) when surgery "fixes" the problem for long. There is always something that could easily go wrong and ruin everything that we've worked so hard for. And I can't help but feel like we dropped the ball, didn't do enough, didn't take good enough care of her.
It's hard to feel part of the spinning world as a parent of a child with medical problems or special needs, so I'm very lonely. Very few people "get" me, so I confide in very few people. These days, it's my fellow Peter's Anomaly moms (or my therapist...). This is my choice, so not asking anyone to feel bad for me. It just makes sense for me and is easier to talk to someone who has been in my shoes. Even if I've never met them in person. I feel so awful after hearing bad news, and I can't expect anyone to stop their lives and get that. I'm very grateful to have met good friends who have kids with Peter's. I don't know how I'd get through this without them.
I apologize for the downer entry, but this is the point of a blog, not to sugar-coat, so I'm laying it out there. Thank you for your support... I got such a moving response from people after my first two entries, and I really appreciate that.
Monday, April 29, 2013
The club we don't want to join
I feel like a broken record saying this but it looks like Avery's going to have to face yet another surgery sooner than we thought. We had a visit with Dr. Sood, her neurosurgeon, this morning, and due to the size of her ventricles, and the fact that she's been getting randomly sick from pressure in her brain since January, he feels a shunt revision is necessary. Even though this issue has kept us up at night (literally) for months, we both had hoped he'd say, "just keep doing what you're doing - everything is functioning fine." Instead, he showed us the most recent scan of her little brain, pointing out that her ventricles (which hold the fluid in her brain) are larger than he'd like. He explained that the shunt is draining too slowly and a clog is most likely the problem. The clog is probably tissue forming around the catheter in the shunt. Tissue forming around important objects in Avery's body is something we're super familiar with... it happens with the little shunts in her eyes, and around her cornea grafts. It's never good and it's never preventable. Gravity has been helping her thus far (being elevated when she sleeps), as well as us manually pumping the valve every night and early morning. However, he believes a serious clog is inevitable, and we're worried we may end up in the ER if we let it go.
A few months ago, while in the waiting room at Children's, we heard a mom referring to her daughter, who was in surgery for a shunt revision, say to Dr. Sood, "we don't want to become members of the 'Shunt Revision Club.' Basically, some kids get shunts and go years and years without needing a revision, and their revisions are easy and totally successful. There are other cases, though, where revisions happen multiple times a year, because doing one causes problems that result in needing another. Each time they do a revision, it requires cutting into her head and a minimum one night stay in the hospital. After a revision is done, for one year following, there is a 30-40% chance that something will go wrong with the shunt. These don't seem like horrible odds, but if you know our history with odds, we have reason to worry. Like always, I hope for the best, but expect the worst. The Shunt Revision Club seems like the worst.
So, again, I have that numb feeling that is so familiar after receiving information like this. We are faced with putting Avery through more pain, more anesthesia, more time off school, and more risks. We have to face a very real possibility that while we are bringing home our second child this fall, we may be dealing with Avery's health issues at the same time. Two or so years ago, this is news that I'd flip out about. I'd be inconsolable and hide under the covers for a few hours, then be angry with God for awhile. Today, I am sad, I am disappointed and scared, and I am angry at God, but I'm handing it. I'm in control of my emotions more these days because I've had so many experiences under my belt to know that losing my mind will get me nowhere. I can worry all I want that this surgery will cause more problems than we already have, or that we'll be carting our newborn to the hospital to visit Avery. But worrying about things we cannot control is useless. We can be proactive and bring up concerns, which is how we got in his office this morning in the first place, but we can't dwell on the unknown. I am typing this to also try and convince myself, honestly. It's hard to believe these words. I am 110% worn out, and tired of bad news every other week.
The good this week was the fact that Avery started communicating the words, "on" and "off." She's tried these words in the past, but now she's using them correctly and consistently. She is so proud of herself and this morning, the first thing she did when she got up was point to my lamp and say "ah," (which is "on"). It's such a small little word, but means so much progress. And "progress" is a word that Dr. Sood brought up this morning. He asked us, as he always does, about her development. We explained that it's still slow, but it is not regressing. He did confirm something that he has only alluded to in the past. Something that John and I both figured she had, but never heard him say for sure. She has a mild case of Cerebral Palsy, or CP. In some way, it's a bit of a relief to put a reason with the problems she has, but it's never fun or easy to hear your child has a diagnosis like this. It is mild, and we know that it could be so much worse, but it's hard to swallow.
Please continue to think positively for her ... days like this, I wonder if praying and positive thinking even work, but I suppose that things may be much worse without it!
A few months ago, while in the waiting room at Children's, we heard a mom referring to her daughter, who was in surgery for a shunt revision, say to Dr. Sood, "we don't want to become members of the 'Shunt Revision Club.' Basically, some kids get shunts and go years and years without needing a revision, and their revisions are easy and totally successful. There are other cases, though, where revisions happen multiple times a year, because doing one causes problems that result in needing another. Each time they do a revision, it requires cutting into her head and a minimum one night stay in the hospital. After a revision is done, for one year following, there is a 30-40% chance that something will go wrong with the shunt. These don't seem like horrible odds, but if you know our history with odds, we have reason to worry. Like always, I hope for the best, but expect the worst. The Shunt Revision Club seems like the worst.
So, again, I have that numb feeling that is so familiar after receiving information like this. We are faced with putting Avery through more pain, more anesthesia, more time off school, and more risks. We have to face a very real possibility that while we are bringing home our second child this fall, we may be dealing with Avery's health issues at the same time. Two or so years ago, this is news that I'd flip out about. I'd be inconsolable and hide under the covers for a few hours, then be angry with God for awhile. Today, I am sad, I am disappointed and scared, and I am angry at God, but I'm handing it. I'm in control of my emotions more these days because I've had so many experiences under my belt to know that losing my mind will get me nowhere. I can worry all I want that this surgery will cause more problems than we already have, or that we'll be carting our newborn to the hospital to visit Avery. But worrying about things we cannot control is useless. We can be proactive and bring up concerns, which is how we got in his office this morning in the first place, but we can't dwell on the unknown. I am typing this to also try and convince myself, honestly. It's hard to believe these words. I am 110% worn out, and tired of bad news every other week.
The good this week was the fact that Avery started communicating the words, "on" and "off." She's tried these words in the past, but now she's using them correctly and consistently. She is so proud of herself and this morning, the first thing she did when she got up was point to my lamp and say "ah," (which is "on"). It's such a small little word, but means so much progress. And "progress" is a word that Dr. Sood brought up this morning. He asked us, as he always does, about her development. We explained that it's still slow, but it is not regressing. He did confirm something that he has only alluded to in the past. Something that John and I both figured she had, but never heard him say for sure. She has a mild case of Cerebral Palsy, or CP. In some way, it's a bit of a relief to put a reason with the problems she has, but it's never fun or easy to hear your child has a diagnosis like this. It is mild, and we know that it could be so much worse, but it's hard to swallow.
Please continue to think positively for her ... days like this, I wonder if praying and positive thinking even work, but I suppose that things may be much worse without it!
Saturday, April 13, 2013
Three Years Old...Already
Happy 3rd Birthday, my sunshine! I know every mom says this,
but cannot believe three years have passed so quickly. I am sad that you are not feeling your
best this week – I wanted so badly for you to enjoy your birthday totally
healthy, and even though you won’t remember (which everyone keeps telling me
like that makes me feel better), I am sad for you that you have to go through
this stuff. You have had a lot
going on with your brain and your eyes this year (and it’s only April). As always in your little life, when it
rains, it pours. But, also as
always, you’ve handled it like a champ – never knowing what you’re missing or
what you should be feeling like.
You feel better for one minute and you smile as if it’s been okay the
whole day. And that’s what I wish
someone had told me three years ago, when I was trying to cope with your
diagnosis and imagine how your life would be. I wish someone told me that you would handle it, smiling
like a trooper. I am so proud of
you and so proud to be your mom.
Now let’s go have a fun day…and some cake and ice cream :)
Avery’s Light
I started this blog in November 2011, but like most moms,
time is a shortage, and more important things came up. I thought what better a
time to restart it than her third birthday, especially since she has so much
going on. This will be used to
update interested friends and family on her health and progress, as well as to
explain various things about Avery’s conditions that people don’t understand. And if nothing else, and no one reads
this, it will still serve as a place for me to vent. I apologize ahead of time for rambling (since I’ve waited 3
years to start, there is a lot to catch up on), and for the next 5.5 months, I
apologize for overly-emotional entries, as I’m dealing with pregnancy hormones J Thanks for reading!
Reflection and a quick recap of her journey so far…
As we sat in that hospital room yesterday, waiting to go
back for what felt like the thousandth exam under anesthesia since Avery were
born, I couldn’t help but think about the last three years and how we got here.
We were awaiting the status of Avery’s 6th and 7th
donor corneas, and I felt like I was hanging by a thread – emotionally,
mentally, physically. We had
started our day on such a bad note – waking to the sound of her getting sick
from the pressure in her head, and feeling that helpless feeling because
there’s nothing we can do to prepare for it or stop it. In addition, the three of us haven’t
slept a good night’s sleep in months (due to middle-of-the-night drops and
repositioning her sleep position), making us edgy and exhausted. Oh yeah, and I’m 15 weeks pregnant,
sometimes wondering, “what were we thinking?!” To say the least, we are tired. A person can only take so much, and it’s been a lot. But, just when I think I can’t take any
more stress or bad news, more comes our way and we handle it. Or we get a piece of good news, and use
that to get through the bad stuff.
Like so many times before, our concern yesterday was not
only the status of her eyes, but also the status of her brain. Days like this, I am so angry. I want to blame someone for making my
daughter go through all this pain and discomfort, especially the day before her
birthday! We were in the hospital
on her 2nd birthday – why again? I probably am grumpy and short with the nurses and 20 people
that come through our room asking the same questions over and over…”when’s the
last time she had something to eat or drink?, “How does she usually do with the
anesthesia? “do you want to carry her back to the OR?” But, I soon realize that I have to snap
out of it, and carry on with the tasks at hand because this is our situation
and there is no running from it.
Thankfully, John was able to take off work and come with me. When she woke up vomiting and lethargic
two days in a row, and my pregnancy hormones and nerves were fried, I didn’t
think I could handle taking her alone, which is what I’d normally do.
We talked to Dr. Sood’s (Avery’s neurosurgeon) assistant,
and he recommended we start manually pumping the valve in her head – which done
by compressing a little “button” just under the skin, behind her right ear –
consistently, every night before she goes to bed, and right before she wakes
up. If this doesn’t do the trick,
we need to replace the valve in her head.
A surgery that opens the door for other issues. But again, there are little options,
and this is the life of a patient with hydrocephalus. Again, anger overcomes me as I think back to the reason why
she has this condition in the first place. The result of poor care from her first neurosurgeon when she
was a newborn. This is a pain and
an anger that I will never get rid of.
I don’t think I’ll ever get over this incident, as it caused my child a
lifetime of health issues, surgeries (four so far on her brain) and
developmental delays. When she’s
already got enough on her plate.
More on that another time.
So, check off “brain” on our list, now onto the eyes, as Dr.
Dunn (her cornea surgeon) comes into the room. At these exams, although I’ve become somewhat jaded
throughout these last three years (I don’t freak out anymore about anesthesia,
IVs or saying goodbye in the OR anymore), I still get that familiar pit in my
stomach waiting to hear if everything looks okay. I have heard from Dr. Dunn and Dr. Roarty many times at EUAs
and surgeries that “things are looking great,” only to hear a month, three
months, eight months later that her glaucoma has drastically spiked, or her
valves are clogged, or her corneas have failed. It is hard to get excited when you hear “things look great”
when you know that can change tomorrow.
But I remain hopeful. I
have to – if I look at our history, there is no other option in our situation
than to remain hopeful. And
yesterday was one of those times – kinda.
Things looked “great” in the left eye, but the right eye has a small
defect so he needed to once again stitch her lids partially closed. This is called a tarsorophy, and it’s
an evil thing in my book. It makes
putting drops in a nightmare, it makes her sore to the touch for several days,
and it narrows her line of sight.
But, he insists it’s for the good of healing her grafts, and again, we
have no choice.
I can still clearly remember waiting to hear the status of
her very first cornea, almost three years ago. At that time, she was 7 weeks old, lying in a hospital bed
of the Pediatric Intensive Care Unit, fighting a life-threatening meningitis
infection in her brain (the aforementioned “incident” I’ll never get over). To this day, saying those words is
still unbelievable. We had been
through so much already, and sat there about to hear that not only was that
graft not doing well, it was probably toast. At the time, we thought this was the end of the world –
“what?! It failed?? This was going
to last her forever!” We had to
get through this naïve period as every parent with a Peter’s Anomaly child
does. The day the doctors formerly
diagnosed Avery (at just over a week old), they told us that Peter’s would be a
roller-coaster ride – lots of ups and downs, unpredictable turns and
twists. She was a severe
case. And oh are they right.
Since that first failed graft, we’ve seen Avery through 13
eye surgeries, ranging from more cornea grafts, implanted valves to control her
fluid, cauterizing her fluid membranes, sucking out the excess vitreous fluid
in her eye, removing both her natural lenses… and more cornea grafts. The domino effect of glaucoma caused
most of her problems, as well as her body attacking the foreign grafts. And the worst part is, there is little
we can do to prevent any of the bad stuff from happening. We are vigilant about drops – we’ve put
multiple ones in, everyday (often every couple hours) since the day she was
born. We go to great lengths to
make sure she doesn’t rub her eyes, scratch her eyes, get an infection, etc., we
listen to the doctors, cart her back and forth to appointments and exams,
living at the mercy of this disorder, but still, many issues have arisen. And will continue to arise, for the rest of her life (or until they
find a better treatment).
This is the hardest part of Peter’s to explain to friends,
family, and that curious stranger in the grocery store. She will never be “fixed.” Yes, it’s great that this surgery is
over and went well, but that is just the beginning of a very long road. Why so many of the same surgeries? Are you sure you don’t want a different
doctor? It’s the nature of the
disorder, and our doctors are doing an excellent job. Avery is lucky to still have sight in both of her eyes, which is more
than many Peter's cases have.
We never know what’s around the corner for Avery and she can loose her
sight very easily, no matter how well she appears to be doing today. Her vision will most likely never improve
from where it is today either, which is estimated at 20:400 with her glasses
on, and 20:1000 without them on. The
average person can easily achieve 20:20 vision (or close to it) with glasses or
contacts, if not naturally. If you or I had Avery’s vision, we couldn’t
function, but it’s all Avery knows.
Her view of the world is extremely blurry, distorted with almost no
peripheral vision and almost no depth perception. She bumps into a lot of stuff, needs us to put toys, spoons,
etc. right in front of her, and often times, she holds things right up to her
eye to see. She doesn’t see
farther than about 6 feet, so she won’t spot you across a room if you don’t
make noise. She is learning to
walk with a cane so she doesn’t trip over everything in strange places, and she
will likely never drive a car. And
developmentally, well, that’s a whole separate but very large challenge for
us.
Her vision impairment, the amount of surgery and hospital
time, and her neurological issues from meningitis have made a major impact on
her development. She has been
delayed on every “milestone” from day one. She cannot sit in a crowd of her peers, i.e. “average” three
year olds, and even compare. She
is chronologically 3 years old, but much younger in terms of communication (she
doesn’t talk), interaction with others, some physical movements and completing
daily tasks. So not only do I
stress about her health issues, I stress that she’s so behind, and how that’s
going to continue and affect her as she grows each year. i.e. How do you potty train when your
kid can’t tell you she has to go potty?
Or, will Avery even realize she has a baby sibling next fall, since she
doesn’t seem to interact with other people besides her close inner circle? These are things I was terrified to
hear when she was born, but I’ve learned to accept. It’s very sad and unfair, but we will deal with it and she
will have a very happy and normal life.
She was enrolled at four months of age into a program that helps us with
these things, and today, she is in a wonderful special needs pre-K where she
receives therapies for each of her needs.
This program and the therapists and teachers have saved me from going
completely crazy on many occasions, and they assure me that she will be
okay. They have taught us how to
teach Avery simple tasks, in the early months things such as rolling over,
sitting up, grasping things, turning toward light, responding to music, and now
- communicating that she wants more of something, walking, going down steps,
getting around new places, etc.
Most kids pick these things up much more easily. When we used to take Avery to another
child’s birthday party, the park, or any place with other children for that
matter, I would get so depressed, comparing them to Avery and how much more
advanced they were. I still watch
other toddlers, who are six months to a year younger than Avery, run circles
around her and talk in sentences when I can barely get my kid to say “mama.” I won’t lie; it SUCKS. It’s like a knife to my heart. But, I’ve learned, I cannot compare
Avery to those kids. It’s like
comparing apples to… monkeys.
Avery is Avery. She faces
her own challenges and goes at her own pace. She will do so for the rest of her life, and all we can do
is our best to teach her, help her progress, and love her for who she is. And like I said, the good times and
small successes get us through all the bad crap. Like a few weeks ago, when her new clear corneas allowed her
to see bubbles for the first time, or when her teachers tell me how well she’s
doing at school. When she makes a
sound that kind of resembles the word, “on,” when she hands me a toy. When her doctors are amazed how well she
gets around and sees knowing what she has physically. She has overcome an immense amount of challenges,
considering all she’s dealing with.
And she smiles all the time, which heals any bad day.
Ok, I’ve rambled on enough for this entry. I could go on forever but I’ve probably
lost most readers by now. There’s
more to the story for sure, but I’ll save that for other entries. Thank you for listening, for your love
and support these last three years and for your continued love and support.
Have a great 4-13-13!
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