Dear Logan,
Here we are, right before your second birthday! My last blog was back in January and I haven't written for a good reason, you're keeping me busy! This year brought a lot of changes for us, so let's start at the beginning...
In March, you got to take your first real vacation, with approval from your doctor and all the information for Orlando's children's hospital, we packed our bags and hit the road! Yes, we drove it, 15 hours in the car and you did AWESOME! You got a little annoyed towards the end but I'd have been shocked if you didn't. We did all the basic tourist stuff, SeaWorld, Universal studios and Islands of adventure. You LOVE theme parks, the sights, the sounds, the snacks especially. You strutted your stuff all over the place and you need to know that you don't just walk, you walk with purpose and like you own the world. Strangers stop all the time and watch you and smile because you look so sure of yourself and you're a really cute kid.
With spring came several new things , we moved ! To a small town, smaller than where we were, Urbanna. This way Dad could be closer to work and it did come with some great perks for us. We got to go to the camp resort all spring and summer, you loved the playgrounds, the slides and running through the sand mostly. No swings. You hate swings. You really fell in love with the water park, which we had avoided the year before because they seem so dirty and germy to me. You love running through the water sprayers, the puddles of water, going down the baby slide and watching everyone go down the big slides! We ate snow cones on the beach, rode around on the golf cart people watching, it was a good time!
But with spring and summer also came the strange fevers. You would randomly spike a fever, have no appetite, get strange stools and the belly pains got worse. Around this time I was FED UP with the children's hospital emergency room. You don't have great veins, but you don't have terrible veins. The people in the emergency room never, ever listen to us and try to keep poking you and poking and you and I got tired of that. After one particularly horrible visit where they wrapped you in a heavy blanket and held you down, I said no more! We started taking you to your pediatrician, she gets a vein the first try every time, if you needed labs. We flat out refused to take you to the emergency room unless it was a real emergency. This was a really hard decision for us to come to, we don't want to take a single chance with your health, ever! But it was getting so horrible for you and it was pointless to put you through it. We were admitted ONE time this year, that's it! And all they did was keep us one night and watch you. We still haven't found a reason for the fevers. They have continued on and off since the spring. But your liver enzymes are better than ever. Your iron levels, not so much. They tanked and we had to be sent to Cancer and Blood Disorders again. Which is basically the worst office in the world to deal with but you love the doctor! Actually you even hugged him which was weird because you hate doctors and nurses and anyone in scrubs. So after a nightmare of them not being able to get a vein we walked out, on our return visit they had a nice guy from patients advocates waiting for you. I really liked this guy because he paid attention to what we said, he wouldn't let the VAT lady hold you down, he let you sit up and watch Thomas and Friends. It went much smoother after that, you had to be given an infusion of iron to boost your levels so you strutted around with your IV pole for an hour playing with toys.
As of right now, your health remains stable. We just had some positive results from your last ultrasound and you have a PVL test coming up at the end of the month.
We took a short family trip in September to the mountains of Tennessee and you got to hike and even walk behind a waterfall! Your dad has had to work A LOT during the summer and we all need a break. This is the first year we've taken vacations together. With me staying home with you and Devin, money is tight around here, but we're trying to put the focus on family time. You just never know how much time we will all have together, life is unpredictable. We want to make as many memories for you guys as we can. Overall this year, you and Devin have been able to do a lot of fun things together and with your grandparents and cousins. Grandma, Lorrie, Caleb and Emma have all come down to go to the water park and hang out with us, Granddad, Maw, Christina, Maverick Addy and Will have come up as well as Katy and Nate.
A lot of the reason I write these blogs is simply so both you and I can look back later and remember. You're changing, you're getting so big! I held off on cutting those baby curls until your hair got so long people thought you were a girl and I couldn't brush it. Sorry about that, but when you're a parent yourself you'll realize how hard it is to let go of the "baby things" . You're everyday life is pretty relaxed, you don't sleep through the night and you're trying to stop napping so some nights you're in bed by 9 exhausted or some days you a take a 6 o'clock nap and are up till 2am. Your stomach gives you a lot of issues but at this point its just a constant struggle to adjust your meds and diet to keep you comfortable. You have had a lot of long nights up screaming in pain and I rock you, cuddle you, walk you until you can get comfortable enough to sleep. I wish I could find a way to stop the pain but please know I'm trying hard. You're only on 2 medications right now!!! Whoop! Just your ursodiol and magnesia. On a typical day we play outside a lot, you ride your car around, wave to every car that passes our house and you love our walks to the Marnia to watch the boats. We got two kittens a few months ago, Agnes and Edith and you're obsessed with them, they hate you right now. Mostly because you pull them by their hair and try to carry them all around the house. But to be honest, they don't seem to be the type to want to love on people anyways so maybe they hate everyone. You're favorite things to watch on TV are Thomas and friends or The Incredibles. In fact your birthday party this weekend will be all Thomas! You get up every morning and we build your big wooden tracks all over the living room and then you make Dad build when he gets home too. You are a very active, sweet, beautiful child. You have the BEST smile, it lights up your whole face and it makes your eyes sparkle. You've developed a lot of different smiles, the surprised happy smile, the sly " I'm about to do something bad" smile and of course your fake smile. Your laughs are harder to come by, we have to work hard to entertain you to get those giggles!
Everyone is so proud of how far you've come Logan! No one would ever know you had a serious medical condition by looking at you. You look healthy and happy and like a ball of energy! ( this blog wasn't written at one time, you'd never give me that much time) You did your second fundraising walk for your hospital, CHKD, this June! You walked and sat in the stroller some because we were racing Will and Aunt TT.
This is long because I had to recap so much.. I promise to make the time to write more often. I have a lot more to say to you, so tomorrow I'll be writing you after you go to sleep. Tomorrow will be your last night as a one year old. Don't grow too fast sweetheart, "Bommie" is trying to enjoy every day and every cuddle.
Here we are, right before your second birthday! My last blog was back in January and I haven't written for a good reason, you're keeping me busy! This year brought a lot of changes for us, so let's start at the beginning...
In March, you got to take your first real vacation, with approval from your doctor and all the information for Orlando's children's hospital, we packed our bags and hit the road! Yes, we drove it, 15 hours in the car and you did AWESOME! You got a little annoyed towards the end but I'd have been shocked if you didn't. We did all the basic tourist stuff, SeaWorld, Universal studios and Islands of adventure. You LOVE theme parks, the sights, the sounds, the snacks especially. You strutted your stuff all over the place and you need to know that you don't just walk, you walk with purpose and like you own the world. Strangers stop all the time and watch you and smile because you look so sure of yourself and you're a really cute kid.
With spring came several new things , we moved ! To a small town, smaller than where we were, Urbanna. This way Dad could be closer to work and it did come with some great perks for us. We got to go to the camp resort all spring and summer, you loved the playgrounds, the slides and running through the sand mostly. No swings. You hate swings. You really fell in love with the water park, which we had avoided the year before because they seem so dirty and germy to me. You love running through the water sprayers, the puddles of water, going down the baby slide and watching everyone go down the big slides! We ate snow cones on the beach, rode around on the golf cart people watching, it was a good time!
But with spring and summer also came the strange fevers. You would randomly spike a fever, have no appetite, get strange stools and the belly pains got worse. Around this time I was FED UP with the children's hospital emergency room. You don't have great veins, but you don't have terrible veins. The people in the emergency room never, ever listen to us and try to keep poking you and poking and you and I got tired of that. After one particularly horrible visit where they wrapped you in a heavy blanket and held you down, I said no more! We started taking you to your pediatrician, she gets a vein the first try every time, if you needed labs. We flat out refused to take you to the emergency room unless it was a real emergency. This was a really hard decision for us to come to, we don't want to take a single chance with your health, ever! But it was getting so horrible for you and it was pointless to put you through it. We were admitted ONE time this year, that's it! And all they did was keep us one night and watch you. We still haven't found a reason for the fevers. They have continued on and off since the spring. But your liver enzymes are better than ever. Your iron levels, not so much. They tanked and we had to be sent to Cancer and Blood Disorders again. Which is basically the worst office in the world to deal with but you love the doctor! Actually you even hugged him which was weird because you hate doctors and nurses and anyone in scrubs. So after a nightmare of them not being able to get a vein we walked out, on our return visit they had a nice guy from patients advocates waiting for you. I really liked this guy because he paid attention to what we said, he wouldn't let the VAT lady hold you down, he let you sit up and watch Thomas and Friends. It went much smoother after that, you had to be given an infusion of iron to boost your levels so you strutted around with your IV pole for an hour playing with toys.
As of right now, your health remains stable. We just had some positive results from your last ultrasound and you have a PVL test coming up at the end of the month.
We took a short family trip in September to the mountains of Tennessee and you got to hike and even walk behind a waterfall! Your dad has had to work A LOT during the summer and we all need a break. This is the first year we've taken vacations together. With me staying home with you and Devin, money is tight around here, but we're trying to put the focus on family time. You just never know how much time we will all have together, life is unpredictable. We want to make as many memories for you guys as we can. Overall this year, you and Devin have been able to do a lot of fun things together and with your grandparents and cousins. Grandma, Lorrie, Caleb and Emma have all come down to go to the water park and hang out with us, Granddad, Maw, Christina, Maverick Addy and Will have come up as well as Katy and Nate.
A lot of the reason I write these blogs is simply so both you and I can look back later and remember. You're changing, you're getting so big! I held off on cutting those baby curls until your hair got so long people thought you were a girl and I couldn't brush it. Sorry about that, but when you're a parent yourself you'll realize how hard it is to let go of the "baby things" . You're everyday life is pretty relaxed, you don't sleep through the night and you're trying to stop napping so some nights you're in bed by 9 exhausted or some days you a take a 6 o'clock nap and are up till 2am. Your stomach gives you a lot of issues but at this point its just a constant struggle to adjust your meds and diet to keep you comfortable. You have had a lot of long nights up screaming in pain and I rock you, cuddle you, walk you until you can get comfortable enough to sleep. I wish I could find a way to stop the pain but please know I'm trying hard. You're only on 2 medications right now!!! Whoop! Just your ursodiol and magnesia. On a typical day we play outside a lot, you ride your car around, wave to every car that passes our house and you love our walks to the Marnia to watch the boats. We got two kittens a few months ago, Agnes and Edith and you're obsessed with them, they hate you right now. Mostly because you pull them by their hair and try to carry them all around the house. But to be honest, they don't seem to be the type to want to love on people anyways so maybe they hate everyone. You're favorite things to watch on TV are Thomas and friends or The Incredibles. In fact your birthday party this weekend will be all Thomas! You get up every morning and we build your big wooden tracks all over the living room and then you make Dad build when he gets home too. You are a very active, sweet, beautiful child. You have the BEST smile, it lights up your whole face and it makes your eyes sparkle. You've developed a lot of different smiles, the surprised happy smile, the sly " I'm about to do something bad" smile and of course your fake smile. Your laughs are harder to come by, we have to work hard to entertain you to get those giggles!
Everyone is so proud of how far you've come Logan! No one would ever know you had a serious medical condition by looking at you. You look healthy and happy and like a ball of energy! ( this blog wasn't written at one time, you'd never give me that much time) You did your second fundraising walk for your hospital, CHKD, this June! You walked and sat in the stroller some because we were racing Will and Aunt TT.
This is long because I had to recap so much.. I promise to make the time to write more often. I have a lot more to say to you, so tomorrow I'll be writing you after you go to sleep. Tomorrow will be your last night as a one year old. Don't grow too fast sweetheart, "Bommie" is trying to enjoy every day and every cuddle.