I had one of those moments this morning with Avery when I just wanted to press the pause button on my life and keep things this way forever. It was a simple thing, but one of those life moments that are so special and precious that you, the parent, know how valuable it is. She's been doing really well lately on mimicking sounds and she makes an attempt at pretty much any word you ask her to say. This is huge progress from even the summer and we are so excited.
She has recently found it funny to repeat sounds or exclamations such as "oh yeah!' or a silly laugh, snort or noise. I did one of these laughs this morning and she kept repeating it, followed by giving me an eskimo kiss, which she also just learned to do. She let out big belly laughs and gave me those huge, Avery smiles each time I made the noise, and she tried her hardest to match it. Then she would play with my hair and rub my face, because she loves when I say, "mama's hair, mama's face." I'm sure many parents understand this feeling - when your child learns something new, and is so proud of it that they want to do it over and over. Plus, I got the feeling that she was so happy to play a game and get full attention from her mommy, since that isn't always the case with a new sister around. This back-and-forth exchange was so simple when you compare it to most kids, but to me, it's a big deal. It shows she sees, she is learning to mimic sounds, and she's cognitively more developed. This reaction to my funny laugh will probably come from Lucy when she's 12 months old, and Avery is approaching 4 years in April. This is why these moments are so very precious and I have a celebration inside each time they happen. Because we worked so very hard and waited so very long to get here.
I just had to include this entry so I could look back some day when things are bad, and remind myself of this special moment.
Friday, January 10, 2014
Friday, January 3, 2014
Secret Santas
As this blog serves as documentation of Avery's journey, we have to include a HUGE surprise our family got this Christmas. Our dear friend, Jen Satchell is one of the sweetest people you'll ever meet. She's always thinking of us and Avery; for every single surgery or major appointment that she had this year, I received an encouraging text message from Jen, which is truly the best thing anyone could do for us. She did not stop there, though! She let us know a few weeks ago that her team at work "adopts" families each year for Christmas, and she had not only nominated us, but we were chosen. We didn't really know what to say - we were so touched and speechless, actually. Our family and friends have done so many generous things for us since Avery was born. We always say that we don't need anything but their good thoughts, prayers, and the occasional call to let us know they are there. Regardless, we've been gifted with meals, had our lawn and snow taken care of, our dog cared for, toys and books for Avery, flowers, money toward college, medical expenses and even for our cord blood banking (just to name a few!) We are so appreciative of everyone's kindness and generosity, even though we think it's too much! Our way to return the favor is to continually look for ways to help others, including all of the dear people in our lives, if they ever are in need. We never thought we'd be in the position of caring for a child with chronic medical conditions, and even though we could handle everything without a single act of kindness, it definitely makes the hard times easier when you know you have such an amazing support system.
This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.
Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!
Love,
The Devereuxs
This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.
Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!
Love,
The Devereuxs
Friday, December 6, 2013
Appreciating the little, big things
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.
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.
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 |
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| 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.
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