10 years ago
Wednesday, May 28, 2008
Jared is sick again!
Just when I thought we were getting Jared moving back up on the weight scale, he started throwing up again today. I was so sad to see him sick again and he was pretty lethargic and mellow today. He perked up a little bit tonight so hopefully it won't last as long as the last bug he had just a few weeks ago. This has been such a rough month for him with these nasty stomach bugs and it just seems like he can't quite ever get over them completely. His labs look fine but they did have us take in a urine sample to make sure he doesn't have a UTI, so we'll hear back tomorrow on that. His little arms and legs are so scrawny right now, its no wonder that he isn't walking yet. We'll get him there though. He will probably just decide to do it one day and then take off. I am exhausted so I am going to head to bed. Jared just doesn't seem to appreciate sleep as much as I do (we are going to have a sleep study done in July), so I better get a little shut eye while I have the chance!
Monday, May 26, 2008
Happy Memorial Day!
On this Memorial Day when we are remembering those who have passed and the lives that they lived, I couldn't help but think about Jared's donor. He and his family are true heroes because they gave life as life was lost. I wish that I could better express my gratitude for them. I hope that some day we will know more about him and the life that he led. Jared is alive and thriving because of him and he will always be remembered. Thank you Jared's Angel! We will never forget you!
Tuesday, May 20, 2008
I'm Drowning!
Do you ever feel that you are drowning in life? Sometimes I just feel so frustrated because there is so much more that needs to be done than I can possibly get to. Between all of Jared's needs and keeping up with Tyler and Alyssa I just can't keep afloat. Bed linens need to be changed, clothes folded, bathrooms cleaned, vacuuming done, floors mopped and that is just the inside. Now that it is warming up I have the outside to work on too. Then there is all of Jared's therapy. He still is not close to walking yet and this latest bout of sickness has seemed to really have set him back a month or two. I know that I should be spending more time working with him on so many things but how do I fit it all in? I need to read the scriptures, have some time to contemplate life, keep in touch with dear friends, write thank you notes and oh, some exercise would be fabulous. How do I fit it all in? The truth of the matter is that I can't, but how do I choose what is the most important? One of these days I might figure it out.
Jared is doing better. He has a touch of the cold that I had last week, but it doesn't seem to be to bad as of yet. We spent the ENTIRE day at the hospital yesterday. I left at 8 am and didn't get home until 5 pm. Jared had his normal labs and clinic, but he is also part of a study that is studying one of the immunosuppressants that he is on (cellcept). We just had one visit left to have the study done and so we were trying to get that in as well. We tried getting the study done last Monday but after spending 3 hours trying to get an IV in Jared's poor little body, we gave up and decided to try in another week. Yesterday went better but we still had to wait for the IV team for almost 3 hours and then it still took 2 tries to get the thing in. Jared's poor little veins have just been poked too many times. After we got the IV in we did the first two blood draws and then headed to transplant clinic. Jared was so tired by that point and fell asleep even before the doctor could examine him. After clinic we still had several blood draws so we still had more time to kill before we could go home. It was a long day and Jared and I were so glad to get home. I felt a little bad letting Jared get poked more times than necessary for this study. But I am so grateful for the care that he is receiving and the medicine that is available, that I want it to be available for more children. After seeing so many kids still on steroids at Camp Sunshine, I really felt like we needed to finish the study so that more programs will stop using the steroids that have so many bad side affects. It was a long day, but hopefully worth it. Jared's labs still show EBV and BK so we are still on pins and needles hoping that his little body can keep them under control. We'll just watch and see.
Jared is doing better. He has a touch of the cold that I had last week, but it doesn't seem to be to bad as of yet. We spent the ENTIRE day at the hospital yesterday. I left at 8 am and didn't get home until 5 pm. Jared had his normal labs and clinic, but he is also part of a study that is studying one of the immunosuppressants that he is on (cellcept). We just had one visit left to have the study done and so we were trying to get that in as well. We tried getting the study done last Monday but after spending 3 hours trying to get an IV in Jared's poor little body, we gave up and decided to try in another week. Yesterday went better but we still had to wait for the IV team for almost 3 hours and then it still took 2 tries to get the thing in. Jared's poor little veins have just been poked too many times. After we got the IV in we did the first two blood draws and then headed to transplant clinic. Jared was so tired by that point and fell asleep even before the doctor could examine him. After clinic we still had several blood draws so we still had more time to kill before we could go home. It was a long day and Jared and I were so glad to get home. I felt a little bad letting Jared get poked more times than necessary for this study. But I am so grateful for the care that he is receiving and the medicine that is available, that I want it to be available for more children. After seeing so many kids still on steroids at Camp Sunshine, I really felt like we needed to finish the study so that more programs will stop using the steroids that have so many bad side affects. It was a long day, but hopefully worth it. Jared's labs still show EBV and BK so we are still on pins and needles hoping that his little body can keep them under control. We'll just watch and see.
Thursday, May 15, 2008
Motherhood
I found this poem on a blog that I follow and I thought that it was so great. Most of the time I just feel like I am doing what anyone else does. We do what we have to do because we don't have any choice in the matter. We take each day at a time and deal with whatever that day brings. I know that my life often seems so surreal to me and I often think "is this really my life?'' But I guess the truth of the matter is that, we are asked to do things for our children that we never imagined we would have to do. I am learning the true nature of sacrifice as I journey through motherhood. Sometimes things seem to be harder than I possibly think that I can handle, but in the end, the blessings far out way the hardships.
HAPPY MOTHER’S DAY: Mothers Lie
By Lori Borgman
Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want it to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
The doctor’s words took your breath away.
It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn’t seem possible.
That didn’t run in your family.
Could this really be happening in your lifetime?
There’s no such thing as a perfect body. Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.
Frankly, I don’t know how you do it. Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gate keeper to a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you’re ordinary.
You snap, you bark, you bite.
You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack.
You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.
HAPPY MOTHER’S DAY: Mothers Lie
By Lori Borgman
Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want it to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
The doctor’s words took your breath away.
It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn’t seem possible.
That didn’t run in your family.
Could this really be happening in your lifetime?
There’s no such thing as a perfect body. Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.
Frankly, I don’t know how you do it. Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gate keeper to a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you’re ordinary.
You snap, you bark, you bite.
You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack.
You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.
You’re a wonder.
Wednesday, May 14, 2008
Camp Sunshine!
I'm sorry that it has taken me so long to post. We got back from our trip on Saturday and I came home with a massive cold. It is one of those colds where your head feels like it is about to explode, you can't open your eyes because they hurt and you are achy all over. It has really hit me hard and so it is taking me a while to get moving again. But on with the news!
Camp Sunshine was FABULOUS! We met so many wonderful people and the kids had a fantastic time (and yes, Tyler even had fun). We walked in and immediately had friends. When you already have so much in common it doesn't take long. It was so nice to spend time with people that completely understood everything that we have been going through, because they have been going through it too! I came away with a great appreciation for the wonderful medical care that Jared has received, the great insurance that we have, and the wonderful family and friends that continue to support and love us. Thank You everyone!!!
Tyler and Alyssa both made friends quickly and loved their day camps. The indoor water park was awesome and they both decided that they like water slides. One of our favorite activities was on the last night of camp. The kids made wish boats in their day camps. They were little wooden boats with a candle stuck on them and they got to decorate them. That night we all met around the lazy river and the life guards lit each boat and put it in the river. Each child made a wish before they put their boats in the water. It was so beautiful! The kids' faces were filled with awe and wonder and it was so powerful seeing those little boats lighting up the room. There was such a feeling of hope and peace in the room that seemed to soak into all of us, rejuvenating us all. It was a wonderful finish to the camp. Jeff and I met so many amazing people that are taking life one day at a time, just like we are. The camp staff and volunteers were so amazing and we enjoyed the time that we could spend as a family. Jared was sick the whole week so he couldn't participate in the day camp activities, but he just hung out with Jeff and I. The wonderful life of being immunosuppressed. Jared's two cousins that are his age got a 24 hr. stomach bug and poor Jared had it for 10 days! He's pretty skinny right now as a result but we'll get him fattened up again. I have decided though, that we are never going to get rid of his g-tube. It has kept him out of the hospital many times! We loved our time there and hope that we can make it a yearly tradition (skymiles anyone? :)) Thank You Camp Sunshine for letting us have a fabulous week together as a family!
The rest of the trip was also great. It was so nice to see my sister, Erika and her family. Wisconsin is beautiful! It is so green and hilly and the kids loved counting all of the silos they could see. Erika took good care of us and it was nice to see where she lives and her cute house. It is nice being able to have a picture in my mind of where she lives now. She is definitely too far away though.
We had a wonderful time. The kids traveled really well, Tyler was happy, Jared stayed out of the hospital and Jeff didn't bring his computer! You can't ask for much more than that. I'll try to get some pictures posted soon!
Camp Sunshine was FABULOUS! We met so many wonderful people and the kids had a fantastic time (and yes, Tyler even had fun). We walked in and immediately had friends. When you already have so much in common it doesn't take long. It was so nice to spend time with people that completely understood everything that we have been going through, because they have been going through it too! I came away with a great appreciation for the wonderful medical care that Jared has received, the great insurance that we have, and the wonderful family and friends that continue to support and love us. Thank You everyone!!!
Tyler and Alyssa both made friends quickly and loved their day camps. The indoor water park was awesome and they both decided that they like water slides. One of our favorite activities was on the last night of camp. The kids made wish boats in their day camps. They were little wooden boats with a candle stuck on them and they got to decorate them. That night we all met around the lazy river and the life guards lit each boat and put it in the river. Each child made a wish before they put their boats in the water. It was so beautiful! The kids' faces were filled with awe and wonder and it was so powerful seeing those little boats lighting up the room. There was such a feeling of hope and peace in the room that seemed to soak into all of us, rejuvenating us all. It was a wonderful finish to the camp. Jeff and I met so many amazing people that are taking life one day at a time, just like we are. The camp staff and volunteers were so amazing and we enjoyed the time that we could spend as a family. Jared was sick the whole week so he couldn't participate in the day camp activities, but he just hung out with Jeff and I. The wonderful life of being immunosuppressed. Jared's two cousins that are his age got a 24 hr. stomach bug and poor Jared had it for 10 days! He's pretty skinny right now as a result but we'll get him fattened up again. I have decided though, that we are never going to get rid of his g-tube. It has kept him out of the hospital many times! We loved our time there and hope that we can make it a yearly tradition (skymiles anyone? :)) Thank You Camp Sunshine for letting us have a fabulous week together as a family!
The rest of the trip was also great. It was so nice to see my sister, Erika and her family. Wisconsin is beautiful! It is so green and hilly and the kids loved counting all of the silos they could see. Erika took good care of us and it was nice to see where she lives and her cute house. It is nice being able to have a picture in my mind of where she lives now. She is definitely too far away though.
We had a wonderful time. The kids traveled really well, Tyler was happy, Jared stayed out of the hospital and Jeff didn't bring his computer! You can't ask for much more than that. I'll try to get some pictures posted soon!
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