This month we have two birthdays in the Hoskins' house! My baby boy, Avery, turned 3 this week. I can hardly believe it. In some ways it seems like he has been part of our lives forever; but in other ways, it seems like just yesterday I had a little 2-pound baby that changed my life in more ways than I could ever imagine.
This week, we had Avery's first IEP meeting in preparation for his start into public school this fall. As I listened to each person there summarize their evaluations and observations of Avery, I was struck with how often I focus on what he CAN'T do, when in fact, there are a lot of things he CAN do!
For example, here's a few things that Avery is doing at three. He can sit unsupported and go from lying to sitting on his own. This is something he just learned this year! He can clap his hands, he can wave when prompted with a little bit of thinking on his part, he makes great eye contact when spoken to, and he is very social. In fact, in all of his developmental tests, social-emotional is one area that he scores the highest in...not too far away from the normal range. (He must have get this from his daddy :)) Avery switches hands, examines toys, attempts to "throw" a ball, enjoys little games like peek-a-boo, and even anticipates the next move in some games. He is beginning to "help" get himself dressed by moving his feet toward me when I'm dressing him or lifting a arm when he sees his coat or shirt. He absolutely LOVES bath time, and would sit and play in the bath tub for hours if I had time to sit and watch him that long. Avery recognizes me over strangers, but he has no separation anxiety and goes to anyone easily, which is pretty amazing considering all he's been through. He's becoming increasingly mobile in his own way. He lays down, rolls over, stretches, and then sits up to get to what he wants. He has been pulling his legs up under him in the start of a crawling position. He is quite the mess maker as he loves to empty my diaper bag or pull everything off of a shelf within reach.
One thing that really surprised me that the therapists and psychologist said to me when they first met Avery was how they had heard about Avery and all of his medical conditions and special needs and were expecting a frail little baby with very little personality or interaction with the world. They were so surprised to see such a big, smily, boy who was eager to interact with them and play their games for their evaluations.
So this week on Avery's birthday, I could make a list of all the things he can not do and all of the milestones that he should've met long ago. But, I'd rather not. It makes me too sad as a mommy to think about what he should be doing right now, and I don't want to be sad. I want to be thankful for my special little boy.
One last note, we learned Wednesday, the day before his birthday, that none of us match him for a bone marrow transplant. We're going to save Emerson's cord blood in July and test it, but the doctor from Cincinnati is going to go ahead and begin accessing the National Bone Marrow Registry. Please pray that we will be able to find a match for his transplant. Of all the things that I worry about with Avery, his health issues scare me more than anything. I would love to see him get a successful transplant and close the door to that scary part of his life.
Saturday, April 16, 2011
Friday, April 8, 2011
A Few Words on My 30th Birthday
I never thought I'd see the day when I turned 30. That may sound strange, but seriously, I never imagined life outside of my 20's. Everyone else can age, but me, I'm supposed to be ageless! But when I opened my eyes this morning, the first thought that popped in my mind was, "Yikes! I'm 30 now!" Actually, most days I feel every day of my age, and sometimes I feel more like a 70-year-old.
So what's going on in my world at 30?? I know that someday I'll reminisce about "back when I was 30," so I thought I might just take a few moments to journal about what I'm up to these days.
Well, I guess first and foremost, I'm a mom to two little boys that keep me on my toes. I spend most of my time and energy taking care of them, playing with them, and cleaning up their messes. I spend a lot of my time worrying about whether or not I'm being a good enough mommy or if I'm instilling in them all of the important things that I want to pass on to my children. And last but not least, I spend most of my money buying clothes, toys, and anything else they might need or want. I love being Bryson and Avery's mommy, and despite feeling a little frazzled...well, a lot frazzled sometimes, I wouldn't have it any other way.
Also, I'm expecting a third little bundle of joy in July. This time, we're having a girl, so I'm slowly awakening to the world of all things pink. Some folks might prefer more gender neutral clothing and decor, but I figure I'm finally getting a girl, so I might as well enjoy it!! Especially since according to my husband, the Hoskins family is going to be complete after this baby. One would think that with me being a girl myself and having two sisters this would come easy for me, but honestly, switching gears has been kind of tough. I've always looked longingly at the adorable girls clothing hanging on the racks across the aisle from the boys' department where I hang out. But now that I actually have a reason to shop on that side, I'm having a hard time not getting overwhelmed or wondering what I'll really need. It's kind of like starting all over. I am so excited about meeting our little Emerson Rose.
I feel like over the last few years, I have grown in my Christian walk. Growing older and life in general has led me to depend upon the Lord for strength each day. My greatest desires are to continue to grow and to have the faith that I need to get prayers answered. I want to be an example for my family that they may see Jesus and grow to love him. I hope that this 30th year of my life only brings me closer to God.
I do have a lot of worries and anxieties at this point in my life. I worry about the wrinkles and bags around my eyes, and I find myself investing more money in creams that promise amazing results. I won't even discuss my weight, since it's pretty horrendous how large I am right now. Hopefully, I can work on that after July. I worry about not spending enough time with my husband or being the wife that I should be. I have this mental image of what I should be able to accomplish, how my house should look, and how my cooking should taste, but unfortunately, I fall SO short of these fantastic images. And yes, I already mentioned it, I worry about my kids. I worry about if I'm disciplining them correctly, spending enough quality time with them, teaching them manners, feeding them balanced meals, and making the most of every minute I have with them while they're small. Yes, I know, it sounds like I hold unrealistic expectations for myself or suffer from some obsessive compulsive disorder. Even though I know that sometimes we have to be satisfied with good enough, I can't keep myself from worrying!
One of my biggest concerns at this point in my life is Avery's medical conditions. I can't help but worry about what the future holds for him and us. I just can't imagine life without him, and I'm absolutely not even considering that. I feel so badly that he has to endure so much, and our constant attention to Avery's special needs does add some stress to our family. I try really hard to balance time with Bryson. Yes, Avery's health is a priority, but Phillip and I try to take turns spending the night with Bryson during hospitalizations or taking time away from appointments to have some quality time with him. Right now Avery's condition is more serious than ever and we're waiting on some test results and praying for direction in his treatment. I'm praying that this 30th year brings healing for Avery in any way we can get it.
My personal time is pretty much non-existent, and teaching has taken a back burner to raising my family. I haven't taught at all the last two terms at Sinclair. We are so blessed that Phillip has a job, and I'm able to be a full-time mom.
That's pretty much my life in a nut shell at 30. I'm sure this post will not make anyone envious, but I have to say that I am so happy and blessed (and of course, a little stressed).
So what's going on in my world at 30?? I know that someday I'll reminisce about "back when I was 30," so I thought I might just take a few moments to journal about what I'm up to these days.
Well, I guess first and foremost, I'm a mom to two little boys that keep me on my toes. I spend most of my time and energy taking care of them, playing with them, and cleaning up their messes. I spend a lot of my time worrying about whether or not I'm being a good enough mommy or if I'm instilling in them all of the important things that I want to pass on to my children. And last but not least, I spend most of my money buying clothes, toys, and anything else they might need or want. I love being Bryson and Avery's mommy, and despite feeling a little frazzled...well, a lot frazzled sometimes, I wouldn't have it any other way.
Also, I'm expecting a third little bundle of joy in July. This time, we're having a girl, so I'm slowly awakening to the world of all things pink. Some folks might prefer more gender neutral clothing and decor, but I figure I'm finally getting a girl, so I might as well enjoy it!! Especially since according to my husband, the Hoskins family is going to be complete after this baby. One would think that with me being a girl myself and having two sisters this would come easy for me, but honestly, switching gears has been kind of tough. I've always looked longingly at the adorable girls clothing hanging on the racks across the aisle from the boys' department where I hang out. But now that I actually have a reason to shop on that side, I'm having a hard time not getting overwhelmed or wondering what I'll really need. It's kind of like starting all over. I am so excited about meeting our little Emerson Rose.
I feel like over the last few years, I have grown in my Christian walk. Growing older and life in general has led me to depend upon the Lord for strength each day. My greatest desires are to continue to grow and to have the faith that I need to get prayers answered. I want to be an example for my family that they may see Jesus and grow to love him. I hope that this 30th year of my life only brings me closer to God.
I do have a lot of worries and anxieties at this point in my life. I worry about the wrinkles and bags around my eyes, and I find myself investing more money in creams that promise amazing results. I won't even discuss my weight, since it's pretty horrendous how large I am right now. Hopefully, I can work on that after July. I worry about not spending enough time with my husband or being the wife that I should be. I have this mental image of what I should be able to accomplish, how my house should look, and how my cooking should taste, but unfortunately, I fall SO short of these fantastic images. And yes, I already mentioned it, I worry about my kids. I worry about if I'm disciplining them correctly, spending enough quality time with them, teaching them manners, feeding them balanced meals, and making the most of every minute I have with them while they're small. Yes, I know, it sounds like I hold unrealistic expectations for myself or suffer from some obsessive compulsive disorder. Even though I know that sometimes we have to be satisfied with good enough, I can't keep myself from worrying!
One of my biggest concerns at this point in my life is Avery's medical conditions. I can't help but worry about what the future holds for him and us. I just can't imagine life without him, and I'm absolutely not even considering that. I feel so badly that he has to endure so much, and our constant attention to Avery's special needs does add some stress to our family. I try really hard to balance time with Bryson. Yes, Avery's health is a priority, but Phillip and I try to take turns spending the night with Bryson during hospitalizations or taking time away from appointments to have some quality time with him. Right now Avery's condition is more serious than ever and we're waiting on some test results and praying for direction in his treatment. I'm praying that this 30th year brings healing for Avery in any way we can get it.
My personal time is pretty much non-existent, and teaching has taken a back burner to raising my family. I haven't taught at all the last two terms at Sinclair. We are so blessed that Phillip has a job, and I'm able to be a full-time mom.
That's pretty much my life in a nut shell at 30. I'm sure this post will not make anyone envious, but I have to say that I am so happy and blessed (and of course, a little stressed).
Thursday, March 24, 2011
Update on Avery
Today, Avery received his second platelet transfusion in 9 days. His platelets also reached a new low of 11. For those of you who don't know, normal range is between 150 and 450 (and platelets are measured in thousands). Thanks to a blood transfusion last Thursday, Avery's hemoglobin was great today (13), but his white count was low. So, it seems we are approaching the day that we have dreaded but suspected may come.
Avery's initial diagnosis of Diamond Blackfan Anemia isn't consistent with all of his other symptoms, and it seems he could be developing Aplastic Anemia. We are still waiting for test results on Avery's bone marrow that we sent to Johns Hopkins. However, regardless of diagnosis, as Avery's hematologist said today, it is time to do something else. Our doctor had thought about trying IV IG therapy to treat platelets, which in some cases can extend the life of a platelet cell, but since it seems Avery isn't making any platelets, it isn't likely that it would have any effect on him. So, we discussed a couple of options today.
The first possibility is immuno-suppression therapy. Basically, Avery would receive chemo-like medication that would weaken his immune system and high doses of steroids in hopes that his bone marrow would somehow reset itself and start producing cells normally. Our doctor said that it works about 50% of the time, but in most cases, it isn't a long-term solution and that symptoms return. It also carries high risks of infection, due to suppressing the immune system, and reactions to the different medications he would be given. Also, his blood counts would drop before any improvement might be seen.
The second possibility is a bone marrow transplant. A BMT requires longer stays in the hospital and/or daily visits to the hospital for treatments (6 weeks to 6 months, depending on complications) and a compatible donor must be found. The best results come from sibling matches, so Tuesday, Phillip, Bryson, and I are going to have the blood work drawn for the HLA matching. If by chance one of us, most likely Bryson, would be a complete match, then we would need to decide whether to even do the immuno-suppression therapy. It might be better to just move to the BMT option. If none of us match, we will need to wait until Miss Emerson Rose appears in July. We are making arrangements to have her cord blood collected and tested for a match. If she isn't a match, extended family and the donor registry would be accessed. However, our doctor thinks we need to do something fairly quickly. So, if Bryson isn't a match, we may have to go ahead with the immuno-suppression therapy to buy us some time until a match can be found. Of course, there are many risks with BMT as well, but it also offers the best results if successful.
The HLA results will take a couple of weeks to come back. We are scheduled to meet with Dr. Harris, the Senior Bone Marow Failure Specialist from Cincinnati Children's Hospital. Dayton does not do transplants, so if it comes to that, we will most likely be going to Cincy. We have met Dr. Harris before, and he is very knowledgeable in issues of bone marrow and transplanting. We are hoping that he will be able to give us some advice on what to do or offer us more information.
I know that many of you have kept our family, specifically Avery, in your prayers. But I'm now asking that you pray that we will make the best decision for our son. We're down to very few options, all with risks, and we want to do what is in Avery's best interest. I also would appreciate if you would pray specifically that Bryson would be a match, and if not, that Emerson will be. They are the most likely compatible donors. We sincerely appreciate your concern and prayers for our family.
Bethany
Avery's initial diagnosis of Diamond Blackfan Anemia isn't consistent with all of his other symptoms, and it seems he could be developing Aplastic Anemia. We are still waiting for test results on Avery's bone marrow that we sent to Johns Hopkins. However, regardless of diagnosis, as Avery's hematologist said today, it is time to do something else. Our doctor had thought about trying IV IG therapy to treat platelets, which in some cases can extend the life of a platelet cell, but since it seems Avery isn't making any platelets, it isn't likely that it would have any effect on him. So, we discussed a couple of options today.
The first possibility is immuno-suppression therapy. Basically, Avery would receive chemo-like medication that would weaken his immune system and high doses of steroids in hopes that his bone marrow would somehow reset itself and start producing cells normally. Our doctor said that it works about 50% of the time, but in most cases, it isn't a long-term solution and that symptoms return. It also carries high risks of infection, due to suppressing the immune system, and reactions to the different medications he would be given. Also, his blood counts would drop before any improvement might be seen.
The second possibility is a bone marrow transplant. A BMT requires longer stays in the hospital and/or daily visits to the hospital for treatments (6 weeks to 6 months, depending on complications) and a compatible donor must be found. The best results come from sibling matches, so Tuesday, Phillip, Bryson, and I are going to have the blood work drawn for the HLA matching. If by chance one of us, most likely Bryson, would be a complete match, then we would need to decide whether to even do the immuno-suppression therapy. It might be better to just move to the BMT option. If none of us match, we will need to wait until Miss Emerson Rose appears in July. We are making arrangements to have her cord blood collected and tested for a match. If she isn't a match, extended family and the donor registry would be accessed. However, our doctor thinks we need to do something fairly quickly. So, if Bryson isn't a match, we may have to go ahead with the immuno-suppression therapy to buy us some time until a match can be found. Of course, there are many risks with BMT as well, but it also offers the best results if successful.
The HLA results will take a couple of weeks to come back. We are scheduled to meet with Dr. Harris, the Senior Bone Marow Failure Specialist from Cincinnati Children's Hospital. Dayton does not do transplants, so if it comes to that, we will most likely be going to Cincy. We have met Dr. Harris before, and he is very knowledgeable in issues of bone marrow and transplanting. We are hoping that he will be able to give us some advice on what to do or offer us more information.
I know that many of you have kept our family, specifically Avery, in your prayers. But I'm now asking that you pray that we will make the best decision for our son. We're down to very few options, all with risks, and we want to do what is in Avery's best interest. I also would appreciate if you would pray specifically that Bryson would be a match, and if not, that Emerson will be. They are the most likely compatible donors. We sincerely appreciate your concern and prayers for our family.
Bethany
Thursday, March 17, 2011
Enough Mercy for Me
Lamentations 3:22-23 (King James Version)
22It is of the LORD's mercies that we are not consumed, because his compassions fail not.
23They are new every morning: great is thy faithfulness.
Aren't you glad for God's mercy and compassion? I'll be honest, most days I feel like I must exhaust my allotted supply of mercy for the day with all of my failures, faults, worries, questions, and prayers. I'm a pretty high maintenance child of God. But I've been reminded lately and have found it encouraging to remember that God's mercies are brand new every morning. So when I roll out of the bed (and these days, I am rolling!) and my feet touch the floor, regardless of how much of God's mercy and compassion I consumed the day before, there's a fresh supply waiting for whatever the day brings.
This week has been another particularly stressful week, and I'll spare you the details because I don't want to complain. But I have to admit, I've been relying heavily on the grace of God to keep me sane. A wise friend of mine has reminded me that the best way to cope is to take it one day at a time. And if I take it one day at a time and rely completely on the mercy of God, then I should be able to make it!
One of the songs I have on my blog play list is "Forever God is faithful; Forever God is strong; Forever God is with us; Forever, and ever..."
What a comforting thought! God's mercies are new every morning and His grace is sufficient. Thank you, Jesus.
May God bless!
Bethany
22It is of the LORD's mercies that we are not consumed, because his compassions fail not.
23They are new every morning: great is thy faithfulness.
Aren't you glad for God's mercy and compassion? I'll be honest, most days I feel like I must exhaust my allotted supply of mercy for the day with all of my failures, faults, worries, questions, and prayers. I'm a pretty high maintenance child of God. But I've been reminded lately and have found it encouraging to remember that God's mercies are brand new every morning. So when I roll out of the bed (and these days, I am rolling!) and my feet touch the floor, regardless of how much of God's mercy and compassion I consumed the day before, there's a fresh supply waiting for whatever the day brings.
This week has been another particularly stressful week, and I'll spare you the details because I don't want to complain. But I have to admit, I've been relying heavily on the grace of God to keep me sane. A wise friend of mine has reminded me that the best way to cope is to take it one day at a time. And if I take it one day at a time and rely completely on the mercy of God, then I should be able to make it!
One of the songs I have on my blog play list is "Forever God is faithful; Forever God is strong; Forever God is with us; Forever, and ever..."
What a comforting thought! God's mercies are new every morning and His grace is sufficient. Thank you, Jesus.
May God bless!
Bethany
Sunday, March 13, 2011
The Story of David, According to Bryson
Yesterday, I posted a video of Avery. Bryson saw it and decided he wanted to be the star on today's blog. So, here he is my little orange-haired boy sharing one of his favorite Bible stories. Bryson has a very vivid imagination and loves a good story. If I could just figure out how to channel all of his energy and curiosity into a positive direction then it's hard to say what he could accomplish. He doesn't have all of his facts just right, but he tries!
Enjoy,
Bethany
Enjoy,
Bethany
Saturday, March 12, 2011
Hello, from Avery
This is the day that the Lord hath made; Let us rejoice and be glad in it. Psalm 118:24
While I try to rejoice in every day that the Lord grants me, it's so much easier when it's sunny outside, my husband is home, and my kids are both healthy and happy!
Here's Avery waving hi, which is his latest skill that he is getting better at every day. I think he also tries to make the "h" sound for hi sometimes...at least that's what I like to think! And yes, I do dress my kids. It seems like in most of the pictures I take, they're either in their pajamas or half dressed for some reason.
Please say a prayer for him that his port surgery will go well next week!
Thank you! Hope you're all having a chance to enjoy this beautiful day!
Bethany
While I try to rejoice in every day that the Lord grants me, it's so much easier when it's sunny outside, my husband is home, and my kids are both healthy and happy!
Here's Avery waving hi, which is his latest skill that he is getting better at every day. I think he also tries to make the "h" sound for hi sometimes...at least that's what I like to think! And yes, I do dress my kids. It seems like in most of the pictures I take, they're either in their pajamas or half dressed for some reason.
Please say a prayer for him that his port surgery will go well next week!
Thank you! Hope you're all having a chance to enjoy this beautiful day!
Bethany
Monday, March 7, 2011
March, So Far
They say when March comes in like a lion, it goes out like a lamb. I'm hoping that's true because ours certainly came in like a lion in more than one way!
If you've been anywhere near Ohio, then you know that since March 1, we've had a series of cloudy, cool, rainy days. Add the melted snow from February to the inches of rain we've gotten lately and we've got some serious mud. I think Bryson may be one of the few folks who enjoys that. On the rare afternoon where the temps have climbed above 40 and there has been a lull in the rain, he puts on his mud boots, I roll his pants up a little, and off he goes into our swampy back yard. He plays in the fill dirt Phillip put at the side of our house for spring landscaping and the mud hole where there once was a rotting deck on the back of our house. Then when he knocks on the front door, I pull off his boots and strip off his pants on the porch before allowing him to enter. There he is with little mud splatters all over his red cheeks, as happy as a four-year-old boy can possibly be. I guess that's one of the wonderful things about childhood. Kids can find pleasure in the things in life that grown-ups sometimes find annoying.
March 2, Avery was scheduled for his bone marrow aspiration and biopsy. That morning, Avery woke up with a low grade fever. At the hospital, the hematologist and anesthesiologist debated on continuing with the procedure, but decided to go ahead with it. They took aspirates from both sides of his hips and then a solid bone sample to send to pathology as well. We brought him home, and he was pretty grouchy and tired the rest of the evening and all of Thursday. On Friday morning, I had my 20 week ultrasound scheduled, so Phillip and I dropped the boys off at Sarah's house. Shortly after arriving at the doctor's office, Sarah called and said Avery was running a fever and had a seizure. On our way home, she phoned again to say he had another seizure. I called our pediatrician who said to take him to the ER, so I dropped Phillip and Bryson off at home and took him to the hospital. A chest x-ray showed pneumonia, so he was admitted. His blood counts were also pretty low, so on Saturday he got a blood transfusion. The iv antibiotics and fluids seemed to help a lot. We came home last night, but he's still coughing pretty hard and really fussy. We're going tomorrow to meet with the hematologist and go over some of the results of his bone marrow aspiration and biopsy. We did get some preliminary ones, but I think I'll wait until we have more details before I share.
Oh, just in case you haven't heard yet, we found out at our ultrasound that we're having a baby girl, Emerson Rose! I'm still in shock. Unfortunately, I haven't had a chance to buy anything pink yet. I'm going to try to do that sometime this week. I don't know what in the world we're going to do with a little girl, but I'm SO excited!
So, that's how my March has been so far.
Hoping that the rest of the month resembles a lamb...
Bethany
If you've been anywhere near Ohio, then you know that since March 1, we've had a series of cloudy, cool, rainy days. Add the melted snow from February to the inches of rain we've gotten lately and we've got some serious mud. I think Bryson may be one of the few folks who enjoys that. On the rare afternoon where the temps have climbed above 40 and there has been a lull in the rain, he puts on his mud boots, I roll his pants up a little, and off he goes into our swampy back yard. He plays in the fill dirt Phillip put at the side of our house for spring landscaping and the mud hole where there once was a rotting deck on the back of our house. Then when he knocks on the front door, I pull off his boots and strip off his pants on the porch before allowing him to enter. There he is with little mud splatters all over his red cheeks, as happy as a four-year-old boy can possibly be. I guess that's one of the wonderful things about childhood. Kids can find pleasure in the things in life that grown-ups sometimes find annoying.
March 2, Avery was scheduled for his bone marrow aspiration and biopsy. That morning, Avery woke up with a low grade fever. At the hospital, the hematologist and anesthesiologist debated on continuing with the procedure, but decided to go ahead with it. They took aspirates from both sides of his hips and then a solid bone sample to send to pathology as well. We brought him home, and he was pretty grouchy and tired the rest of the evening and all of Thursday. On Friday morning, I had my 20 week ultrasound scheduled, so Phillip and I dropped the boys off at Sarah's house. Shortly after arriving at the doctor's office, Sarah called and said Avery was running a fever and had a seizure. On our way home, she phoned again to say he had another seizure. I called our pediatrician who said to take him to the ER, so I dropped Phillip and Bryson off at home and took him to the hospital. A chest x-ray showed pneumonia, so he was admitted. His blood counts were also pretty low, so on Saturday he got a blood transfusion. The iv antibiotics and fluids seemed to help a lot. We came home last night, but he's still coughing pretty hard and really fussy. We're going tomorrow to meet with the hematologist and go over some of the results of his bone marrow aspiration and biopsy. We did get some preliminary ones, but I think I'll wait until we have more details before I share.
Oh, just in case you haven't heard yet, we found out at our ultrasound that we're having a baby girl, Emerson Rose! I'm still in shock. Unfortunately, I haven't had a chance to buy anything pink yet. I'm going to try to do that sometime this week. I don't know what in the world we're going to do with a little girl, but I'm SO excited!
So, that's how my March has been so far.
Hoping that the rest of the month resembles a lamb...
Bethany
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