Thank goodness for this garage sale! I've been a busy girl in preparation for the big sale, so it has been a great distraction!
Tomorrow is scan day. Not sure why I insist on getting all worked up as we probably won't even know the results until our appointment with the new doctor next Thursday. I'm assuming if anything is glaringly wrong, then we will be notified. I'm sure Matt will try and find a way to get the radiology report before then!
I'm still plugging my way through the book, "Finding Light in Cancer's Shadow." I came across a great thought while reading tonight. Author Lynn Eib is discussing the fear and paranoia that come with being a survivor, or in my case a mom of a survivor. She says, "You may not be able to completely cancel your membership to Club Paranoia, but you don't have to be a card-carrying member every day!" I love it! Although this week I feel like the president of that club, I know that in time, I will learn to live with these feelings and manage them better. She also reminded me that it is okay to be vigilant, and on top of things...it makes us smart, not paranoid! I think I have a foot in both of those camps though!
So, tomorrow we will leave here by 8am, PT at 9am, to Strong by 11:30am, scans at 12:30am, hopefully home in the late afternoon. I did hear from the NP today who got a call from radiology. You'll remember that Matt and I had several specific requests, one of which being that they just use MRI in order to limit Brady's radiation exposure. I guess the radiology department feels that at CT scan in addition to the MRI is warranted in order to get a good view of the chest. You'll remember that Sloan told us that an MRI would be fine. I guess we have some things to discuss with radiology tomorrow. Perhaps we will go with both scans this time since we are not that far "out of the woods" yet.
Please be praying:
-For Brady as he can't eat or drink until after the scans. He LOVES breakfast and it is so hard to watch him be hungry and not understand why we won't feed him
-For Brady's comfort. These are the first scans since his Broviac was taken out, so he will need to have an IV
-For wisdom and precision of nurses, anesthesiologists, radiologist working with Brady
-For peace and comfort for Matt and I as we keep Brady company and then wait...
We appreciate your love and support more than you know!
Showing posts with label MRI. Show all posts
Showing posts with label MRI. Show all posts
Wednesday, July 29, 2009
Tuesday, July 28, 2009
Brady's Moving Along!
Brady had another great day at PT today. I took several pictures to share with you all that he is working on. Today Linda even got him on the tricycle for the first time! Hooray Brady!
Jumping with both feet off the ground
Push that ball Brady!
Kicking a ball and knocking down the tower!
Going down the stairs!
Our plan for Thursday is for Matt and I to take Brady to PT at 8am. After PT we will try and waste a few hours before heading to Strong by 11:30. His scans are scheduled for 12:30. He can only drink juice until 9:30am, no other food or milk. Poor little guy, he LOVES breakfast, and it is going to be hard for him. Hopefully PT and maybe some playground time will be a good distraction.
Please keep your prayers coming!
Jumping with both feet off the ground
Push that ball Brady!
Kicking a ball and knocking down the tower!
Going down the stairs!
Our plan for Thursday is for Matt and I to take Brady to PT at 8am. After PT we will try and waste a few hours before heading to Strong by 11:30. His scans are scheduled for 12:30. He can only drink juice until 9:30am, no other food or milk. Poor little guy, he LOVES breakfast, and it is going to be hard for him. Hopefully PT and maybe some playground time will be a good distraction.
Please keep your prayers coming!
Monday, July 27, 2009
Getting a Time Tomorrow
No big news today. We headed out to my friend's house "way out in the country" for a playdate. She lives on a gorgeous piece of land, in a pretty house at the end of a long driveway, nestled next to a pasture, near a pretty old barn, up the hill from a pond. It was very pretty indeed! And the kids got to do all sorts of "country things" that they don't do here. They got to see some chickens and watch my friend catch a fish from her pond. Pretty cool...
Cara decided that she wouldn't nap today which was very annoying! I hope this is just a one day fluke and not a trend that could end the most tranquil hours of my day (1-3pm).
The pediatric MRI department is closed on Mondays, so I'm hoping for a call tomorrow to give us our time for Thursday. If I don't hear from them by noon, yours truly will be on the horn looking for a time. If our time is later in the morning, we might try and squeeze in PT that day. I'm praying for an early appointment as our little Brady won't be able to eat or drink. It is getting more difficult the older he gets to distract him from the breakfast that he loves so much!
Our hero conquered a new thing today...he climbed into the van all by himself! Way to go buddy! Well I'm off to my basement for some more work among the piles of stuff down there, yard sale in 4 days!
Cara decided that she wouldn't nap today which was very annoying! I hope this is just a one day fluke and not a trend that could end the most tranquil hours of my day (1-3pm).
The pediatric MRI department is closed on Mondays, so I'm hoping for a call tomorrow to give us our time for Thursday. If I don't hear from them by noon, yours truly will be on the horn looking for a time. If our time is later in the morning, we might try and squeeze in PT that day. I'm praying for an early appointment as our little Brady won't be able to eat or drink. It is getting more difficult the older he gets to distract him from the breakfast that he loves so much!
Our hero conquered a new thing today...he climbed into the van all by himself! Way to go buddy! Well I'm off to my basement for some more work among the piles of stuff down there, yard sale in 4 days!
Wednesday, February 25, 2009
We're Home
We arrived home at about 3:30pm!!! Brady tolerated the chemo so well again! No nausea or vomiting so far. Brady took a nice nap all the way home. His hair had been falling out all day, all over the place. We decided to just buzz it into a really short brush cut (almost shaved). So, it's gone and we are moving on...
We had many consults with different doctors today. Here is a summary:
1. Neurosurgery came in and looked at his back incision. Everything looked good, his reflexes are better than before surgery. He is continuing to amaze us by doing new things all the time. Some are just subtle differences in the way he moves. Other times he just seems more daring, like trying to stand for a second independently.
2. The Physical Therapy department came in and we discussed what options there are for treatment for Brady's gross motor delay. There is a pediatric PT who works at a Strong PT clinic that is an option. We also contacted CP of Rochester and discussed their facility. Early Intervention is still an option as well. So we continue to try and figure out what will best suit Brady's needs.
3. We got the results of the final histology report from the tumor. This test came back negative for chromosomal defect. Basically, it is another plus in Brady's "favorable" column. This was BIG news! Praise God!
4. We had a detailed meeting with the oncologist. Today I was finally ready to see the cancer on the scans. She brought in a computer and showed us the MRI from the day of diagnosis. It was absolutely shocking to see the tumor and exactly how much his spinal cord was being compressed. If you think of his spinal column like a circle, the actual spinal cord itself was a tiny dot just pushed way over to the side of the circle by this tumor. We also were able to see the mass that extends into Brady's chest wall behind his lung. She compared the size of that mass to a golf ball to plum-size. Until today I just couldn't bring myself to look this disease in the face. I'm so glad I did today though, as I feel so much more knowledgeable about what we are dealing with.
5. We have appointments for a repeat CAT scan and MRI on March 5th at 8am. These will be done at the same time under general anesthesia. These tests will show how the tumor has changed due to chemo (We're praying for BIG change!) We will find out that evening or the next day the results of those scans.
6. Our oncologist has contacted Dr. Laquaglia at Sloan Kettering (he is the leading NB surgical expert). We are waiting to hear back, but the goal is to take our two scans down to NYC the week after they are done and meet with him. We aren't sure yet if surgery will happen in that same trip, or if it will be scheduled a few weeks later.
So, there is a lot to process today. I really like days like today though, I feel like we are getting somewhere. A week from Friday we will have our answer about what the 2 rounds of chemo have done. Our doctor is hopeful that the chemo and the upcoming surgery could be enough to get rid of the cancer, but also cautioned us that further chemo/surgery may be necessary.
My friend from New Mexico is flying in tonight to spend a few days with us. It should be a breath of fresh air for all of us and hopefully a chance for some fun!
God continues to faithfully hold us in His hand, I hope it is crystal clear that He continues to work miracles in Brady's life everyday!
We had many consults with different doctors today. Here is a summary:
1. Neurosurgery came in and looked at his back incision. Everything looked good, his reflexes are better than before surgery. He is continuing to amaze us by doing new things all the time. Some are just subtle differences in the way he moves. Other times he just seems more daring, like trying to stand for a second independently.
2. The Physical Therapy department came in and we discussed what options there are for treatment for Brady's gross motor delay. There is a pediatric PT who works at a Strong PT clinic that is an option. We also contacted CP of Rochester and discussed their facility. Early Intervention is still an option as well. So we continue to try and figure out what will best suit Brady's needs.
3. We got the results of the final histology report from the tumor. This test came back negative for chromosomal defect. Basically, it is another plus in Brady's "favorable" column. This was BIG news! Praise God!
4. We had a detailed meeting with the oncologist. Today I was finally ready to see the cancer on the scans. She brought in a computer and showed us the MRI from the day of diagnosis. It was absolutely shocking to see the tumor and exactly how much his spinal cord was being compressed. If you think of his spinal column like a circle, the actual spinal cord itself was a tiny dot just pushed way over to the side of the circle by this tumor. We also were able to see the mass that extends into Brady's chest wall behind his lung. She compared the size of that mass to a golf ball to plum-size. Until today I just couldn't bring myself to look this disease in the face. I'm so glad I did today though, as I feel so much more knowledgeable about what we are dealing with.
5. We have appointments for a repeat CAT scan and MRI on March 5th at 8am. These will be done at the same time under general anesthesia. These tests will show how the tumor has changed due to chemo (We're praying for BIG change!) We will find out that evening or the next day the results of those scans.
6. Our oncologist has contacted Dr. Laquaglia at Sloan Kettering (he is the leading NB surgical expert). We are waiting to hear back, but the goal is to take our two scans down to NYC the week after they are done and meet with him. We aren't sure yet if surgery will happen in that same trip, or if it will be scheduled a few weeks later.
So, there is a lot to process today. I really like days like today though, I feel like we are getting somewhere. A week from Friday we will have our answer about what the 2 rounds of chemo have done. Our doctor is hopeful that the chemo and the upcoming surgery could be enough to get rid of the cancer, but also cautioned us that further chemo/surgery may be necessary.
My friend from New Mexico is flying in tonight to spend a few days with us. It should be a breath of fresh air for all of us and hopefully a chance for some fun!
God continues to faithfully hold us in His hand, I hope it is crystal clear that He continues to work miracles in Brady's life everyday!
Giggles and Graham Crackers
It's 8am..Brady slept on and off all night until about 7:30. He talked during his sleep all night about "socks on!" No that he is awake he is sitting here with me just being hilarious. I LOVE this boy! Everytime he notices the tubes attached to his Broviac that are giving him fluids he says "Uh-oh..no no!" He is playing with all of the medical equipment left in the room from during the night. Right now he has a paper tape measure in his mouth and a graham cracker in his hand. I tell you, this child's silly side amazes me! No signs of nausea this morning. He was moaning throughout the night quite a bit, but I decided to stick by the choice not to give the Decadron. If we had, he wouldn't be this happy boy this morning.
The rounding doctor told me that CT and MRI will be scheduled for two weeks from now (both done under sedation). A follow up meeting about results will be 1-2 days after that. Neurosurgery is stopping by this morning to look at his back. Someone from physcial therapy is coming by as well to look at him. So, a busy morning here, wanted to share some sunshine with you all this morning!
The rounding doctor told me that CT and MRI will be scheduled for two weeks from now (both done under sedation). A follow up meeting about results will be 1-2 days after that. Neurosurgery is stopping by this morning to look at his back. Someone from physcial therapy is coming by as well to look at him. So, a busy morning here, wanted to share some sunshine with you all this morning!
Sunday, January 25, 2009
Seeing God's Grace
We had a memorial service for my Grandma today. My heart was certainly somewhere else, but as much as possible I tried to let my mind be present as I listened to Pastor speak about God's grace. It is IMPOSSIBLE to look back on the events of the last month and not see God's grace sprinkled throughout this journey. With each day's events, I can't help but find incredible encouragement in the assuredness of God's grace from scripture, but how amazing to see it working in our lives. We are desperately trying to cling to this as we continually deal with feelings of sadness, anger, fear, and doubt. I wanted to share with all of you some of these miracles as a witness to God and His grace:
1. After our Dec23rd appt with the developmental specialist, Brady was given a diagnosis of cerebral palsy. The doctor set us up with an appointment for an MRI of JUST Brady's head for Jan21st. As the weeks went on and Matt and I studied more about CP, it just didn't seem like Brady. We both had an instinct that this was not what was wrong with Brady. I felt compelled to call the doctor and ask that they also do an MRI of the spine. The secretary was VERY reluctant to even ask the doctor, she told me several times it was not going to show anything for a kid with CP. I persisted. I called back two times and finally she agreed to run it by the doctor. They finally said they would do it if the insurance would okay it.
2.Up until Jan1st, we had Univera insurance. The first time the doctor submitted just the brain MRI to the insurance, they denied it. After Jan1st, we had to switch to Preferred Care. At this point, they submitted the request for both the brain and spine. We were okayed without any problem for both tests.
3. It is unimaginably horrifying to think of what would have happened if #1 and #2 above hadn't happened. We have been told that the tumor on Brady's spine could have caused paralysis at anytime. Had we not insisted that the spine be captured by an MRI, we would have never known about the cancer. Brady would most like have become paralyzed and more than likely the cancer would have spread making successul treatment highly unlikely. If we hadn't switched insurances, we would not have been able to get the spine MRI done, at least not for quite sometime.
It is impossible for us not to see our God at work in Brady's life. It is easy for us to be mad, we are mad. It is easy for us to be scared out of our minds, at times we are paralyzed by fear. But, we are committed to seeing God's grace in Brady's life and to share that with others. May he be a living testimony of God's goodness that is available for all who believe.
1. After our Dec23rd appt with the developmental specialist, Brady was given a diagnosis of cerebral palsy. The doctor set us up with an appointment for an MRI of JUST Brady's head for Jan21st. As the weeks went on and Matt and I studied more about CP, it just didn't seem like Brady. We both had an instinct that this was not what was wrong with Brady. I felt compelled to call the doctor and ask that they also do an MRI of the spine. The secretary was VERY reluctant to even ask the doctor, she told me several times it was not going to show anything for a kid with CP. I persisted. I called back two times and finally she agreed to run it by the doctor. They finally said they would do it if the insurance would okay it.
2.Up until Jan1st, we had Univera insurance. The first time the doctor submitted just the brain MRI to the insurance, they denied it. After Jan1st, we had to switch to Preferred Care. At this point, they submitted the request for both the brain and spine. We were okayed without any problem for both tests.
3. It is unimaginably horrifying to think of what would have happened if #1 and #2 above hadn't happened. We have been told that the tumor on Brady's spine could have caused paralysis at anytime. Had we not insisted that the spine be captured by an MRI, we would have never known about the cancer. Brady would most like have become paralyzed and more than likely the cancer would have spread making successul treatment highly unlikely. If we hadn't switched insurances, we would not have been able to get the spine MRI done, at least not for quite sometime.
It is impossible for us not to see our God at work in Brady's life. It is easy for us to be mad, we are mad. It is easy for us to be scared out of our minds, at times we are paralyzed by fear. But, we are committed to seeing God's grace in Brady's life and to share that with others. May he be a living testimony of God's goodness that is available for all who believe.
Tuesday, January 20, 2009
MRI Time
I just got the call from the MRI department at Strong. Brady is scheduled for 9am, we need to arrive at 8am. That means we will be leaving here by 7am. Because he is having his head and total spine scanned, the nurse said it will take about 2 1/2 hours once he is under anesthesia. What are we going to do for 2 1/2 hours? I'm so glad Matt will be there with me...maybe we can sit and have an actual conversation for the first time in months! I really liked the nurse on the phone and she will be one of the two nurses with Brady during the anesthesia process and afterward. She definitely had "triplet fever" and needed to know everything about what it's like to raise triplets. Then she heard Allie cry and she practically flipped out when she found out we had 4 under 2. She told me to bring his "lovies" so it looks like Cookie Monster and Brady's favorite polka dot blanket are coming along too:) I'm glad the MRI is early since he cannot eat or drink until afterward.
I'm planning on asking for a preliminary report and a copy of the scan before we leave and I'm hoping they will accommodate. I'll update as soon as I can once we get home. Please be praying!
I'm planning on asking for a preliminary report and a copy of the scan before we leave and I'm hoping they will accommodate. I'll update as soon as I can once we get home. Please be praying!
Wednesday, January 14, 2009
I'm Blogging for Brady!
Hi friends and family,
I've been saying I'm going to do it for a while, and tonight I finally am starting! Blogging...I'm certainly no expert at this, but I think it is an important thing for me to do. This blog will keep friends and family up to date on Brady's progress. It seems clear that we have a long road ahead of us as we seek out a diagnosis, prognosis, and treatment for Brady. You will be able to check in on how things are going by reading my posts. Even more importantly, Matt and I believe in the power of prayer! For that reason I will be giving specific requests for prayer. Please pray for Brady! We know that God loves him even more than we do (thanks Julie for reminding me of that) and that He is holding Brady in the palm of His hand.
My first update: We finally have an appointment for Brady's MRI. His appointment is scheduled for next Wednesday January 21st. Our insurance change held things up a bit, but I'm so relieved to finally have the date set. This is the first very important step towards figuring things out. The MRI will have to be done under anesthesia, so needless to say, we are very anxious. I'm having a hard time thinking about my little boy being taken away, put to sleep, having an IV, and laying inside a big machine. But, it needs to be done so that the doctors can identify what exactly is going on.
At our last appointment the doctor, who is a developmental pediatrician at Strong Hospital, did a physical exam and medical history of Brady. Based on his evaluation, he feels that Brady has a form of cerebral palsy called spastic diplegia. Cerebral palsy is a permanent condition that occurs due to some form of brain injury usually occuring at birth. It is being assumed that Brady being born 6 weeks premature was the reason that his brain suffered some sort of injury. The injury ususally involves bleeding in some part of his brain. Only Brady's legs are affected so we can assume that his motor cortex is damaged in some way. The MRI of his brain will most likely show evidence of a past brain bleed which would solidfy this diagnosis. The doctor told us the scan could show something more serious, but that is not likely. He is confident that with a CP diagnosis, Brady will walk, but there is no definite time table. CP is a life long condition that doesn't progressively get worse, but does affect a person throughout their life.
Please pray:
For peace for Matt and I as we deal with anxiety and fear waiting for an official diagnosis.
For Brady and that he feels safe and secure throughout the procedure.
For wisdom for the people performing and interpreting the test.
Thank you all for caring about our family,
Megan
I've been saying I'm going to do it for a while, and tonight I finally am starting! Blogging...I'm certainly no expert at this, but I think it is an important thing for me to do. This blog will keep friends and family up to date on Brady's progress. It seems clear that we have a long road ahead of us as we seek out a diagnosis, prognosis, and treatment for Brady. You will be able to check in on how things are going by reading my posts. Even more importantly, Matt and I believe in the power of prayer! For that reason I will be giving specific requests for prayer. Please pray for Brady! We know that God loves him even more than we do (thanks Julie for reminding me of that) and that He is holding Brady in the palm of His hand.
My first update: We finally have an appointment for Brady's MRI. His appointment is scheduled for next Wednesday January 21st. Our insurance change held things up a bit, but I'm so relieved to finally have the date set. This is the first very important step towards figuring things out. The MRI will have to be done under anesthesia, so needless to say, we are very anxious. I'm having a hard time thinking about my little boy being taken away, put to sleep, having an IV, and laying inside a big machine. But, it needs to be done so that the doctors can identify what exactly is going on.
At our last appointment the doctor, who is a developmental pediatrician at Strong Hospital, did a physical exam and medical history of Brady. Based on his evaluation, he feels that Brady has a form of cerebral palsy called spastic diplegia. Cerebral palsy is a permanent condition that occurs due to some form of brain injury usually occuring at birth. It is being assumed that Brady being born 6 weeks premature was the reason that his brain suffered some sort of injury. The injury ususally involves bleeding in some part of his brain. Only Brady's legs are affected so we can assume that his motor cortex is damaged in some way. The MRI of his brain will most likely show evidence of a past brain bleed which would solidfy this diagnosis. The doctor told us the scan could show something more serious, but that is not likely. He is confident that with a CP diagnosis, Brady will walk, but there is no definite time table. CP is a life long condition that doesn't progressively get worse, but does affect a person throughout their life.
Please pray:
For peace for Matt and I as we deal with anxiety and fear waiting for an official diagnosis.
For Brady and that he feels safe and secure throughout the procedure.
For wisdom for the people performing and interpreting the test.
Thank you all for caring about our family,
Megan
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