Well, we are into our third hospitalization for the month of April already. Yes, Avery has definitely spent more days inpatient than out, and his few days where he wasn't admitted, we were in Day Hospital for 5 to 10 hours getting drugs to fight this stubborn virus and boost his cell production. I could continue with all the reasons we're still here and how I'm wishing, wishing, wishing that we could move on to the next phase where we get to go home and watch Avery grow stronger.
Instead, I think I'll just share a few random things about my other kids. I don't get to spend nearly as much time with them as I'd like, and so I cherish the limited time I have with them or the stories and pictures my mom and sister share about their daily activities. It is these mundane pieces of information that keep me going somedays!
Bryson, as you may know, is quite a character. On my last trip home, we were driving down the road and there was some mangled animal in the road ahead. I tried to drive over it so that I didn't hit it again. Bryson said, "Hey mom, I think there's a hedgehog in the road up there." I just nodded and said, "Yeah, maybe." Then he said, "I think it's taking a nap in the road?" I paused for a moment, and then said, "Maybe!" I didn't want to burden him with the knowledge that the poor "hedgehog" was never waking up from that nap.
Then, I got permission for Bryson to come spend the day with Avery in the hospital on his birthday. When we got off the elevator, Bryson said, "Mommy, I can't wait to hear Avery talk today." I replied, "Ummm...what makes you think he's going to talk today?" Matter-of-factly, "Because he's four now, Mom. He can't stay a baby forever!" Some things are just too hard to explain to a child.
Then my sister texted me that Bryson asked her when Grace was going to get a brother or sister. Sarah told him that she didn't think she was getting one. Bryson said, "Why? Are you fixed? Cause if you're fixed that means you can't have babies!" Let me explain: Rodney and Sarah recently got their old dog, Maggie, back from Rodney's sister. When Maggie returned, she had been fixed, and Sarah told Grace and Bryson that dogs that were fixed couldn't have puppies. You've got to appreciate his logic!
Now, Miss Emerson is transforming from a passive baby to an active crawler that is always wanting what is just out of reach. Unfortunately, she goes better in reverse than forward. She has this habit of backing under the furniture or any little ledge, like the cabinets, and then she starts hollering like she's scared to death. Her little bum gets stuck under all kinds of things, and she just hasn't figured out how to get it out! She's also making the cutest faces. She wrinkles her nose into the cutest grin, and then she has this face that says, "I'm not sure if I'm scared or happy right now," where her mouth is turned up, but her eyebrows are raised and forehead furrowed like she is prepared to burst out into tears at any second. I'm loving every moment I get to be with her, and just am blown away by how quickly she is growing!
My mom told me yesterday that Emerson was crawling over to her dishwasher and looking at herself in the stainless steel surface. She had her arms spread, trying to hug herself, and then was putting her face against the door and kissing the baby. I guess admiring her reflection kept her occupied for quite some time...what a girl, right?
I'm sure I lost half of my readers already. I can't say I blame them. But I love observing and hearing about all the wonderful things my kids say and do as they grow. These precious moments will forever be precious memories!
Bethany
Sunday, April 22, 2012
Monday, April 16, 2012
Tedious Details
I can only imagine how disappointing my blog must be for the few of you who read. I try to post about Avery regularly because I know this is where many people go to get an update, but beyond that, I'll admit: I'm a bore. If I really shared all the tedious details, you would either fall asleep from lack of attention or if you really tried to keep up, your head might spin.
With the risk of sounding redundant, if I could use one word to describe my life right now, it would be off-balance. I never feel quite right or complete. I'm pretty much always tired, and I never feel like I'm caught up on anything. When I get to go home for my quick over-nighters every so often, I am greeted by an empty, dusty house. In the beginning, my OCD tendencies forced me to dust and sweep each time I went home, and then I quickly learned that when I would return home a week or so later, it wouldn't look like I had done a thing, and I really didn't want to spend half of my limited time at my house cleaning it. Don't worry; I'm not a complete slob. I do clean my toilets every few visits, keep up with laundry, dishes, and make sure there's not clutter in the floors or anything. But, my house just feels un-lived in, and there are dust bunnies gathering around the legs of my couch on my hard wood floors that I absolutely force myself to ignore when I walk through the door. Each time I miss a few days with one of my kids, I feel so out of touch. Emerson is doing new things almost daily, and it's hard for me to keep up. Sometimes I worry that she doesn't know who exactly is her mommy, although she says "Mamamama" an awful lot! Bryson is doing well, but he has gotten so clingy that when Phillip or I are around, he doesn't let us out of his sight much. He has been sleeping with us since Avery has been here...bad habit, I know. But what can I say? His bed buddy was in the hospital and my bed buddy was staying with his, and we just needed each other's company. Now he says he isn't going to sleep in his bed until Avery comes home. Uh-oh. I'm a little worried!
We have slowly been evolving as a family living with a child with special needs. Our denial has finally faded, and we're trying to make sure Avery has access to as many resources as possible in his future. We have learned that the older he gets, the more difficult transportation, bathing, diapering, and just everyday care becomes. We've also learned there are some amazing programs out there for people like Avery, but unfortunately, getting connected with them isn't always easy. Something I did learn this week that was a bit disappointing was that while Avery qualifies medically for Social Security Disability, we don't qualify financially to draw. We were denied over a year ago, but it was confirmed recently in a meeting with the Financial Advocate here at CCHMC. Apparently, a married couple can not have more than $2000 in resources - that includes our equity in our home, Phillip's 2002 truck that is paid off, a small life insurance policy that Phillip's parents bought for him as a kid that we continue to pay on, and our modest savings account. Despite our current shrinking income, I was told by that we would be better off if we rented a house, had two cars with payments on them, and spent our savings. Clearly, the system is flawed. I feel like we are being penalized for working so hard by buying, remodeling, and selling disgusting repossessed homes and trying to live within our means. But, we have been told that Avery might receive some help through the Montgomery County MRDD to be placed on a Medicaid Waiver so that he will qualify for secondary isurance regardless of our income. The downside is that there is a 1-2 year waiting list. Yikes!
Some other recent bad news is that my step-grandpa, Ralph, is probably going to be passing away soon. He has been a wonderful grandpa to me all of my life, and it is hard to see him drifting away. I went yesterday to Hospice to see him and say good-bye just in case I don't get to see him again. Again, I'm reminded how life is but a vapor, and I want my life to be lived in a way that I don't have regrets when it's my time to go!
Some good news is that I'm going to be gaining a step-mother-in-law (is that the proper title??). My father-in-law has been a very lonely man since Carolyn passed away a year and a half ago. He has met a lovely woman, Mary Isaacs, who has had a rough time too over the last couple of years, and I guess they fell for each other. Anyway, the date is set for July 14, and I hope they have many happy years together! I think having a wedding to look forward to may help him get through these difficult treatments he is taking right now for his cancer.
One thing about this whole process I have learned is that I really don't have many problems. Well, I do have a couple really big problems, but not nearly as many as I used to think. I hear people complain about their bad days, and I know I have been guilty of the same thing, but really, those bad days aren't so bad. They're just part of life. If money can fix it or buy it, it's not really a problem. If a little effort or hard work can accomplish it, it's not such a big deal. Sometimes I long for the days when I thought everyday inconveniences -- fussy kids, messy houses, heavy traffic, unpaid bills, two-faced people, etc. -- were problems worth losing sleep over. Oh, how life has a way of changing one's perspective!
You know what actually sounds good to me right now? Grocery shopping. Actually buying more groceries than a loaf of bread, gallon of milk, and formula for Em. Cooking. No, I'm not a great cook, but I enjoy preparing and eating meals at home, and I miss that. Sitting on my deck and enjoying these warm evenings. Working in my yard. Taking the kids to the park. See, I told you this would be boring!! But the ordinary things that I see so many people post about and hear so many talk about doing and take for granted are the things I miss so badly!
With the risk of sounding redundant, if I could use one word to describe my life right now, it would be off-balance. I never feel quite right or complete. I'm pretty much always tired, and I never feel like I'm caught up on anything. When I get to go home for my quick over-nighters every so often, I am greeted by an empty, dusty house. In the beginning, my OCD tendencies forced me to dust and sweep each time I went home, and then I quickly learned that when I would return home a week or so later, it wouldn't look like I had done a thing, and I really didn't want to spend half of my limited time at my house cleaning it. Don't worry; I'm not a complete slob. I do clean my toilets every few visits, keep up with laundry, dishes, and make sure there's not clutter in the floors or anything. But, my house just feels un-lived in, and there are dust bunnies gathering around the legs of my couch on my hard wood floors that I absolutely force myself to ignore when I walk through the door. Each time I miss a few days with one of my kids, I feel so out of touch. Emerson is doing new things almost daily, and it's hard for me to keep up. Sometimes I worry that she doesn't know who exactly is her mommy, although she says "Mamamama" an awful lot! Bryson is doing well, but he has gotten so clingy that when Phillip or I are around, he doesn't let us out of his sight much. He has been sleeping with us since Avery has been here...bad habit, I know. But what can I say? His bed buddy was in the hospital and my bed buddy was staying with his, and we just needed each other's company. Now he says he isn't going to sleep in his bed until Avery comes home. Uh-oh. I'm a little worried!
We have slowly been evolving as a family living with a child with special needs. Our denial has finally faded, and we're trying to make sure Avery has access to as many resources as possible in his future. We have learned that the older he gets, the more difficult transportation, bathing, diapering, and just everyday care becomes. We've also learned there are some amazing programs out there for people like Avery, but unfortunately, getting connected with them isn't always easy. Something I did learn this week that was a bit disappointing was that while Avery qualifies medically for Social Security Disability, we don't qualify financially to draw. We were denied over a year ago, but it was confirmed recently in a meeting with the Financial Advocate here at CCHMC. Apparently, a married couple can not have more than $2000 in resources - that includes our equity in our home, Phillip's 2002 truck that is paid off, a small life insurance policy that Phillip's parents bought for him as a kid that we continue to pay on, and our modest savings account. Despite our current shrinking income, I was told by that we would be better off if we rented a house, had two cars with payments on them, and spent our savings. Clearly, the system is flawed. I feel like we are being penalized for working so hard by buying, remodeling, and selling disgusting repossessed homes and trying to live within our means. But, we have been told that Avery might receive some help through the Montgomery County MRDD to be placed on a Medicaid Waiver so that he will qualify for secondary isurance regardless of our income. The downside is that there is a 1-2 year waiting list. Yikes!
Some other recent bad news is that my step-grandpa, Ralph, is probably going to be passing away soon. He has been a wonderful grandpa to me all of my life, and it is hard to see him drifting away. I went yesterday to Hospice to see him and say good-bye just in case I don't get to see him again. Again, I'm reminded how life is but a vapor, and I want my life to be lived in a way that I don't have regrets when it's my time to go!
Some good news is that I'm going to be gaining a step-mother-in-law (is that the proper title??). My father-in-law has been a very lonely man since Carolyn passed away a year and a half ago. He has met a lovely woman, Mary Isaacs, who has had a rough time too over the last couple of years, and I guess they fell for each other. Anyway, the date is set for July 14, and I hope they have many happy years together! I think having a wedding to look forward to may help him get through these difficult treatments he is taking right now for his cancer.
One thing about this whole process I have learned is that I really don't have many problems. Well, I do have a couple really big problems, but not nearly as many as I used to think. I hear people complain about their bad days, and I know I have been guilty of the same thing, but really, those bad days aren't so bad. They're just part of life. If money can fix it or buy it, it's not really a problem. If a little effort or hard work can accomplish it, it's not such a big deal. Sometimes I long for the days when I thought everyday inconveniences -- fussy kids, messy houses, heavy traffic, unpaid bills, two-faced people, etc. -- were problems worth losing sleep over. Oh, how life has a way of changing one's perspective!
You know what actually sounds good to me right now? Grocery shopping. Actually buying more groceries than a loaf of bread, gallon of milk, and formula for Em. Cooking. No, I'm not a great cook, but I enjoy preparing and eating meals at home, and I miss that. Sitting on my deck and enjoying these warm evenings. Working in my yard. Taking the kids to the park. See, I told you this would be boring!! But the ordinary things that I see so many people post about and hear so many talk about doing and take for granted are the things I miss so badly!
Saturday, April 14, 2012
Happy Birthday, Avery!
I know we say this about all of our children's birthdays, but it really is so hard to believe my little Avery is four years old today. Four years ago this morning, I went into my appointment at the specialist's office, lunch packed, prepared to go to work afterward. Instead, I was told that there was basically no fluid left around my baby, that he wasn't responding well on the non-stress tests, that he hadn't gained an ounce in a month, and he needed to come out immediately. I called my husband, who was scrubbed in for his nursing school requirement of observing a c-section, and he left that OR to take me to my own c-section.
When they held up my tiny baby, all I could see were eyes and knees. His eyes were wide open staring at me, and his knees looked like they were just too big for his body. I remember crying and saying, "Oh no!" when I laid eyes on him, because he just didn't look like any baby I had ever seen.
Four years later, that 2 lb 8 oz, 14 inch long baby has grown into a little boy who is now nearly 40 lbs and around 37 inches long. Each day, month, and year with Avery seems to have brought a new challenge. I guess God knew that Phillip and I couldn't handle all the bad news at once, so we've gotten it slowly. Each time I thought, "This is it. Things couldn't get any worse!", wouldn't you know, things did get worse.
But when I look at Avery, I don't just see disabilities and a scary diagnosis; I see the epitome of love. I've been blessed with many amazing people in my life, but in most situations, love comes with strings attached or at least expectations. Not so with Avery. He doesn't expect anything, and when any gesture, regardless of how small, is offered, his eyes fill with wonder and joy. If he is feeling well, he'll break into a clap. It doesn't matter that I sing the same songs to him over and over ("The Wheels on the Bus", "Call Me Gone" by the Hinsons, or "You Are my Sunshine" are his favorites!), or it's just looking out the window or playing a silly game, he grins every time, and if he doesn't, I know it's because he physically just can't. I've come to realize that I depend on that smile and that clapping probably more than I should. When he is smiling and clapping, I know we're going to be okay. When he has one of his bad days where he doesn't seem to have the strength to do it, I feel anxious and worried. Seriously, Avery would sit all day in a dirty diaper with no toys or anyone to play with and probably not complain. But when he sees his daddy or me walk by, he'll smile and start clapping or reach out to us to be picked up. For that reason, I had to let him sleep in our room until he was 13 months old, because when he woke at night, he didn't cry. I only knew by hearing him rub his little feet together, which the baby monitor wouldn't pick up. If he can just cuddle up on our laps and be held, he is absolutely content. Despite the painful experiences he has had, he still enjoys the attention he gets from nurses and doctors. He is just pleasantly surprised that they have come to see him.
When I think about I Corinthians 13, I know that I fall so short of many of those descriptions of love...suffereth long, patient, kind, seeketh not her own, is not easily provoked, not puffed up. But Avery's child-like, completely innocent love is perfect in ways that his body and mind are not. He doesn't ask for anything in return, he just loves.
I have to say that sometimes it is difficult to look for the good in a situation. But I have been blessed to have Avery in my life. With my other children, I feel the need to influence and teach, constantly molding and instilling values and morals. With Avery, yes, we spend a lot of time taking care of his physical needs and encouraging him to learn new skills, but he is the one who is teaching me so much.
I pray that Avery's fourth year of life brings him the health and peace that he so deserves. No, he doesn't expect it; he has acclimated to discomfort. But I would love to see my little boy have the chance to just live without pain and hospital stays.
Though you may never read this, little one, I love you and wish you many more happy birthdays!!
When they held up my tiny baby, all I could see were eyes and knees. His eyes were wide open staring at me, and his knees looked like they were just too big for his body. I remember crying and saying, "Oh no!" when I laid eyes on him, because he just didn't look like any baby I had ever seen.
Four years later, that 2 lb 8 oz, 14 inch long baby has grown into a little boy who is now nearly 40 lbs and around 37 inches long. Each day, month, and year with Avery seems to have brought a new challenge. I guess God knew that Phillip and I couldn't handle all the bad news at once, so we've gotten it slowly. Each time I thought, "This is it. Things couldn't get any worse!", wouldn't you know, things did get worse.
But when I look at Avery, I don't just see disabilities and a scary diagnosis; I see the epitome of love. I've been blessed with many amazing people in my life, but in most situations, love comes with strings attached or at least expectations. Not so with Avery. He doesn't expect anything, and when any gesture, regardless of how small, is offered, his eyes fill with wonder and joy. If he is feeling well, he'll break into a clap. It doesn't matter that I sing the same songs to him over and over ("The Wheels on the Bus", "Call Me Gone" by the Hinsons, or "You Are my Sunshine" are his favorites!), or it's just looking out the window or playing a silly game, he grins every time, and if he doesn't, I know it's because he physically just can't. I've come to realize that I depend on that smile and that clapping probably more than I should. When he is smiling and clapping, I know we're going to be okay. When he has one of his bad days where he doesn't seem to have the strength to do it, I feel anxious and worried. Seriously, Avery would sit all day in a dirty diaper with no toys or anyone to play with and probably not complain. But when he sees his daddy or me walk by, he'll smile and start clapping or reach out to us to be picked up. For that reason, I had to let him sleep in our room until he was 13 months old, because when he woke at night, he didn't cry. I only knew by hearing him rub his little feet together, which the baby monitor wouldn't pick up. If he can just cuddle up on our laps and be held, he is absolutely content. Despite the painful experiences he has had, he still enjoys the attention he gets from nurses and doctors. He is just pleasantly surprised that they have come to see him.
When I think about I Corinthians 13, I know that I fall so short of many of those descriptions of love...suffereth long, patient, kind, seeketh not her own, is not easily provoked, not puffed up. But Avery's child-like, completely innocent love is perfect in ways that his body and mind are not. He doesn't ask for anything in return, he just loves.
I have to say that sometimes it is difficult to look for the good in a situation. But I have been blessed to have Avery in my life. With my other children, I feel the need to influence and teach, constantly molding and instilling values and morals. With Avery, yes, we spend a lot of time taking care of his physical needs and encouraging him to learn new skills, but he is the one who is teaching me so much.
I pray that Avery's fourth year of life brings him the health and peace that he so deserves. No, he doesn't expect it; he has acclimated to discomfort. But I would love to see my little boy have the chance to just live without pain and hospital stays.
Though you may never read this, little one, I love you and wish you many more happy birthdays!!
Sunday, April 1, 2012
Setback
Well, as my title reflects, we've hit another bump in the road. Hopefully, we get over it quickly, but one just never knows about Avery!
His swallowing difficulties compounded by some extra mucus peaked on Friday during our Day Hospital appointment. I think he had his regular nurses and nurse practitioner a little worried. After seeing how miserable he was and the serious choking episodes he was having (which I have been complaining of for weeks now!), they were considering admitting him. I persuaded them to just give him extra steroids, antibiotics, and let me call in the morning for an update and decide from there. I was really hoping to avoid an admission. Shortly after that decision was made, he had a particulary severe choking episode which caused him to vomit all over me. I had to walk over to the Ronald McDonald House in a drenched jean skirt to bathe and change quickly. When I returned to the hospital, his nurses said he had spiked a fever. I knew what that meant: an automatic admission for at least 48 hours. So, I called Phillip so that he could come down since I had Bryson with me.
That brings us to the present where Avery has spend his second night back "home" in the Bone Marrow Transplant unit. I think he was happy to see some of his favorite aids and nurses, who almost all stopped by to check out his new hair he has grown. Tomorrow, his regular attending physician will be back in, and she will be making the decisions regarding a plan from here. I am hoping to be assertive enough and make my case that prolonging an esophageal dilitation surgery may be more risky than doing one with less than stellar counts. (His BK virus count is up to 1.6 million despite anti-viral infusions 3 times a week).
As always, we appreciate your continued prayers!! I am growing weary with this process. It's beyond difficult to see my little guy feel badly so much, and I am missing my other two kids and husband terribly! I know that it will take some adjusting, but I'm looking so forward when we can actually, as Bryson says, be a family again.
Bethany
His swallowing difficulties compounded by some extra mucus peaked on Friday during our Day Hospital appointment. I think he had his regular nurses and nurse practitioner a little worried. After seeing how miserable he was and the serious choking episodes he was having (which I have been complaining of for weeks now!), they were considering admitting him. I persuaded them to just give him extra steroids, antibiotics, and let me call in the morning for an update and decide from there. I was really hoping to avoid an admission. Shortly after that decision was made, he had a particulary severe choking episode which caused him to vomit all over me. I had to walk over to the Ronald McDonald House in a drenched jean skirt to bathe and change quickly. When I returned to the hospital, his nurses said he had spiked a fever. I knew what that meant: an automatic admission for at least 48 hours. So, I called Phillip so that he could come down since I had Bryson with me.
That brings us to the present where Avery has spend his second night back "home" in the Bone Marrow Transplant unit. I think he was happy to see some of his favorite aids and nurses, who almost all stopped by to check out his new hair he has grown. Tomorrow, his regular attending physician will be back in, and she will be making the decisions regarding a plan from here. I am hoping to be assertive enough and make my case that prolonging an esophageal dilitation surgery may be more risky than doing one with less than stellar counts. (His BK virus count is up to 1.6 million despite anti-viral infusions 3 times a week).
As always, we appreciate your continued prayers!! I am growing weary with this process. It's beyond difficult to see my little guy feel badly so much, and I am missing my other two kids and husband terribly! I know that it will take some adjusting, but I'm looking so forward when we can actually, as Bryson says, be a family again.
Bethany
Subscribe to:
Posts (Atom)