Other than I took Noah for his 18 month well baby visit and he is now 36lbs and 36 inches tall...yes at 18 1/2 months. He is HUGE!!!! He is doing wonderfully though! The dr said all looks great with him which is amazing to hear after all the crazy stuff going on with Micah!
Blessings
Melinda
Monday, April 20, 2009
Friday, April 17, 2009
A BEAUTIFUL day
It was gorgeous here today. Sunny, warm, and just plain wonderful. Noah, Micah, Grandma Flick, and I all played outside. It was a great help in raising my mood. Praise the Lord for beautiful weather.
I heard from the hospital and Micah has his Chest MRI on Thursday at 2:30pm. I am not looking forward to this as he will have to be sedated again which most likely means he will not be able to eat for 8 hours before the test....you tell me how I am supposed to deal with a hungry baby all day long. I am stressed out about it already and feel horrible knowing that I won't be able to feed my 5 month old who doesn't understand any of what is going on and why he can't eat or why he keeps getting poked at and messed with. He is such an amazing little guy, a fighter and is coming through all of this very very well but it still kills me to see him in pain when they run test, to see him crying and not be able to comfort him. I love my little guys so much and I feel like I am living in a nightmare right now. I just keep praying that he doesn't have "neuroblastoma". I keep praying and hoping that the mass in or on his lung (still unsure which one it is...who do i believe?) will be benign, or that when we go get his MRI on Thursday they will not find it. I keep praying that it will disappear on it's own and that Micah won't have to have major surgery to remove it. I want someone to tell me that they are 100% certain that Micah is going to be okay. I never thought I would ever have to take a child of mine to the hospital to see an oncologist. Cancer is what happens to other people, not to us, not to Micah. But it looks like it is happening to us, to Micah. I am continuing to try to hold on hope that that isn't what this is, but it's hard as all of the dr's that have seen him so far are saying yes to neuroblastoma or NB for short.
I really just want things to go back to "normal", to the life we had before Micah got sick with RSV. I know it's a blessing that this has been found so early but it still really blows.
I am tired
I am sad
I am confused
I am worn out
I am in crisis mode
I am running on God's grace and comfort
I am thankful for family and friends
I am ready for good news
I heard from the hospital and Micah has his Chest MRI on Thursday at 2:30pm. I am not looking forward to this as he will have to be sedated again which most likely means he will not be able to eat for 8 hours before the test....you tell me how I am supposed to deal with a hungry baby all day long. I am stressed out about it already and feel horrible knowing that I won't be able to feed my 5 month old who doesn't understand any of what is going on and why he can't eat or why he keeps getting poked at and messed with. He is such an amazing little guy, a fighter and is coming through all of this very very well but it still kills me to see him in pain when they run test, to see him crying and not be able to comfort him. I love my little guys so much and I feel like I am living in a nightmare right now. I just keep praying that he doesn't have "neuroblastoma". I keep praying and hoping that the mass in or on his lung (still unsure which one it is...who do i believe?) will be benign, or that when we go get his MRI on Thursday they will not find it. I keep praying that it will disappear on it's own and that Micah won't have to have major surgery to remove it. I want someone to tell me that they are 100% certain that Micah is going to be okay. I never thought I would ever have to take a child of mine to the hospital to see an oncologist. Cancer is what happens to other people, not to us, not to Micah. But it looks like it is happening to us, to Micah. I am continuing to try to hold on hope that that isn't what this is, but it's hard as all of the dr's that have seen him so far are saying yes to neuroblastoma or NB for short.
I really just want things to go back to "normal", to the life we had before Micah got sick with RSV. I know it's a blessing that this has been found so early but it still really blows.
I am tired
I am sad
I am confused
I am worn out
I am in crisis mode
I am running on God's grace and comfort
I am thankful for family and friends
I am ready for good news
Psalm 60:12
"With God we will gain the Victory."
"With God we will gain the Victory."
Thursday, April 16, 2009
Next week
Next week is going to be a busy but somewhat exciting week for us. On Monday I get to take Noah to his 18 month well baby visit!!!! I am excited to see what the dr has to say about my "BIG" boy. Who by the way is FINALLY walking more than 95% of the time!!! WhooHooo!!! He is so stinking cute and while he doesn't "talk" he does babble and say "yeah" all the time and point to everything! Tonight I asked him where Micah was and he pointed right to him. I've also found Noah laying his head next to Micah's and holding his hand. They love each other already!!!! Noah is already a great big brother!!
On Wednesday morning Micah is going to meet the Chief of Oncology at Children's. We are hoping to find out more answers and opinions to what the next step is with this little guy whom we love so much! Sometime next week Micah will be having a Chest MRI at Children's as well. I'm still not sure if we are going with Children's or St. John's but it's looking more like Children's. We will see though how things go next week.
But the EXCITING part of next week comes at 3pm on Wednesday. We will FINALLY find out where we will be moving to this summer. Seth will be doing his vicarage finally (after 5 years of living here) and we are looking forward to a change in scenery but a little bit nervous to be leaving with all of this going on with Micah.
Good news is that Micah took a nap this morning without his o2 on and his o2 stats stayed between 97-100% (NORMAL RANGE!!!). Usually when he is without the o2 and sleeping he drops into the 65% area and then goes up and down up and down....but not today....maybe this is the start of him getting better at least in one area!!!!
Thank you for the prayers!! Please keep them coming as we still have a long road ahead of us.
Blessings
Melinda
On Wednesday morning Micah is going to meet the Chief of Oncology at Children's. We are hoping to find out more answers and opinions to what the next step is with this little guy whom we love so much! Sometime next week Micah will be having a Chest MRI at Children's as well. I'm still not sure if we are going with Children's or St. John's but it's looking more like Children's. We will see though how things go next week.
But the EXCITING part of next week comes at 3pm on Wednesday. We will FINALLY find out where we will be moving to this summer. Seth will be doing his vicarage finally (after 5 years of living here) and we are looking forward to a change in scenery but a little bit nervous to be leaving with all of this going on with Micah.
Good news is that Micah took a nap this morning without his o2 on and his o2 stats stayed between 97-100% (NORMAL RANGE!!!). Usually when he is without the o2 and sleeping he drops into the 65% area and then goes up and down up and down....but not today....maybe this is the start of him getting better at least in one area!!!!
Thank you for the prayers!! Please keep them coming as we still have a long road ahead of us.
Blessings
Melinda
Words that encourage me during this time
Psalm 91:14-16
"Because you love me, I will rescue you.
I will protect you because you know my name.
When you call to me, I will answer you.
I will be with you when you are in trouble.
I will save you and honor you.
I will satisfy you with a long life.
I will show you how I will save you."
Wednesday, April 15, 2009
What we know as of right now....
not much. That's right we finally talked with Dr. Bob last night about 45 minutes after he said he'd call. I don't feel like we got very far though. Here is what he said. Micah needs to have this mass removed and he needs to have it done within the next two weeks (ok so I already knew this part), he needed/wanted to talk to a few more people about what they thought about the mass, removing it, and Micah's breathing issues. Some people/dr's are saying that it's not a good risk to take and some are saying it is. What we know is if they don't remove the mass it could continue to grow and block off air flow, it could spread, or it could shrink. Since we have no idea what it is going to do it is best to remove it. Dr. Bob was supposed to get back to us today about what the surgeons said but of course he never called so I am still waiting. (oh this is the story of my life!!!! waiting waiting waiting!)
Today we met with Dr. H at Children's hospital. He is a surgeon there. We wanted a second opinion and we felt like this would be a good place to start. Well i am more confused now than I was going into the meeting. Dr. H looked at Micah's CT scans and said that the mass is on the "outside" of the lung while Dr. Bob (Micah's oncologist) said it is on the inside of the lung. Dr. Bob says the mass needs to be removed in the next two weeks, Dr. H said he didn't think it was that urgent to remove it so quickly but it should be removed. Dr. H was going to call all of Micah's Dr.'s (let's see there is Dr. S, Dr.I, Dr.B and a few others), he was going to call me back today if he could get ahold of them all but I guess he didn't get ahold of them because I never heard back from him. He was also going to have the radiologist at Children's look at the CT scan to see what they had to say. Dr. H is also pointing his finger at neuroblastoma as the culprit of this mass. Dr. H also feels as though the mass isn't what is causing Micah to have the breathing issues while sleeping so we have gotten no where with this.
How am I feeling? CONFUSED and FRUSTRATED!!!!!!!!! I just want the dr's to all say the same thing, I want them to work together and come back to me and let me know what we are to do next. I want my little boy to be healthy. I am tired of waiting, I am tired of dr's not calling me back when they say they will. I am ready for this nightmare to be over.
Hopefully I will have more to update tomorrow. Again if you've called me and I haven't called back I apologize. I hope to get to everyone as soon as possible.
Thank you so much for all your prayers!! Please keep them coming we need as many as possible, we would LOVE a miracle, and i know our God does them, we are praying for one!!!!
Blessings
Melinda
Today we met with Dr. H at Children's hospital. He is a surgeon there. We wanted a second opinion and we felt like this would be a good place to start. Well i am more confused now than I was going into the meeting. Dr. H looked at Micah's CT scans and said that the mass is on the "outside" of the lung while Dr. Bob (Micah's oncologist) said it is on the inside of the lung. Dr. Bob says the mass needs to be removed in the next two weeks, Dr. H said he didn't think it was that urgent to remove it so quickly but it should be removed. Dr. H was going to call all of Micah's Dr.'s (let's see there is Dr. S, Dr.I, Dr.B and a few others), he was going to call me back today if he could get ahold of them all but I guess he didn't get ahold of them because I never heard back from him. He was also going to have the radiologist at Children's look at the CT scan to see what they had to say. Dr. H is also pointing his finger at neuroblastoma as the culprit of this mass. Dr. H also feels as though the mass isn't what is causing Micah to have the breathing issues while sleeping so we have gotten no where with this.
How am I feeling? CONFUSED and FRUSTRATED!!!!!!!!! I just want the dr's to all say the same thing, I want them to work together and come back to me and let me know what we are to do next. I want my little boy to be healthy. I am tired of waiting, I am tired of dr's not calling me back when they say they will. I am ready for this nightmare to be over.
Hopefully I will have more to update tomorrow. Again if you've called me and I haven't called back I apologize. I hope to get to everyone as soon as possible.
Thank you so much for all your prayers!! Please keep them coming we need as many as possible, we would LOVE a miracle, and i know our God does them, we are praying for one!!!!
Blessings
Melinda
Tuesday, April 14, 2009
Beyond Annoyed
I am beyond annoyed right now. Dr. Bob was supposed to call us at 8pm to talk about the next step in this whole ordeal, it is now 8:30 and no call. Seriously if you say you are going to call then call. It's rude and frustrating to say one thing and then not do it. Now I understand that Dr's are busy but Micah is his patient and we need answers. I'm so thankful that we have a second opinion scheduled for tomorrow (April 15th) at 12:45 with a pediatric cardiac thorasthic surgeon at Children's Hospital. The more we are getting jerk around where we are the more I am leaning towards just switching everything to children's.
A few things we did find out today during Seth's brief converstation with Dr.Bob. 1.) Micah has no other signs of masses anywhere in his body!!! 2.) There is a very small chance that they can do a less invasive type of surgery to remove the mass, the Dr. wasn't very confident that this would work though due to the size of the mass (and it's really not that big to start off with). 3.) Micah will be having surgery within the next two weeks. 4.) The stay at the hospital will be at least 5 days, could be more depending on how he does and how his breathing goes. 5.) Dr. Bob was going to try to talk to a few other dr's to see if they felt that it was safe to go ahead with the surgery even though he has breathing issues, if they don't feel it is safe it sounds like we will "wait and see" what the mass does...this is not really the best idea because they can grow and spread. I think that's all I have for now.
I'm sorry some of you have been calling and haven't gotten through to me, i apologize, but right now i'm working in crisis mode, trying to keep my phone open for dr's to call and to be able to call other dr's. I promise to get back to you all in good time.
A few things we did find out today during Seth's brief converstation with Dr.Bob. 1.) Micah has no other signs of masses anywhere in his body!!! 2.) There is a very small chance that they can do a less invasive type of surgery to remove the mass, the Dr. wasn't very confident that this would work though due to the size of the mass (and it's really not that big to start off with). 3.) Micah will be having surgery within the next two weeks. 4.) The stay at the hospital will be at least 5 days, could be more depending on how he does and how his breathing goes. 5.) Dr. Bob was going to try to talk to a few other dr's to see if they felt that it was safe to go ahead with the surgery even though he has breathing issues, if they don't feel it is safe it sounds like we will "wait and see" what the mass does...this is not really the best idea because they can grow and spread. I think that's all I have for now.
I'm sorry some of you have been calling and haven't gotten through to me, i apologize, but right now i'm working in crisis mode, trying to keep my phone open for dr's to call and to be able to call other dr's. I promise to get back to you all in good time.
Praise God!!!
Praise God!!!! We just heard back (after much nagging and frustration) that there are no other masses in Micah's little body. The only one is the one in his left lung!!!! God is good!!!!
Where do we go from here you might ask. Answer: I have no idea. The oncologist is calling back later to talk us through everything to let us know what the plan of action is. Also...we have an appointment at Children's Hospital tomorrow to get a second opinion from a Cardiac Thorastic (i have no idea how to spell that) Surgeon to see what he says. The way things are going right now I feel like switching to them...but we will see. I'll update as soon as we talk to Dr. Bob to see what he wants to do!
Again...prayers of Thanks for no other masses!!!!!!
God is Good!!!!!!!!
Blessings
Melinda
Where do we go from here you might ask. Answer: I have no idea. The oncologist is calling back later to talk us through everything to let us know what the plan of action is. Also...we have an appointment at Children's Hospital tomorrow to get a second opinion from a Cardiac Thorastic (i have no idea how to spell that) Surgeon to see what he says. The way things are going right now I feel like switching to them...but we will see. I'll update as soon as we talk to Dr. Bob to see what he wants to do!
Again...prayers of Thanks for no other masses!!!!!!
God is Good!!!!!!!!
Blessings
Melinda
Monday, April 13, 2009
Why?
Many people have asked us how we are doing, how we are feeling through all of this and for the most part I'm able to stop and say we are hanging in there. To be honest thought this down right sucks. I don't understand why Micah has to be going through so freaking much. He is such a sweet wonderful little guy who smiles and laughs constantly. He brightens up any room that he is in. So why is he having to go through all of this? Why my baby? I know that people will say it's because we are sinful and live in a fallen world. I know this but it brings no comfort. It down right sucks that Micah has to endure so many test, be poked and prodded, get things shoved down his nose, be sedated, have so many doctors appointments and not be able to go without oxygen while sleeping. He didn't ask for any of this, and while he was born sinful he has been born again, his sins have been washed clean. I sit and watch my little man sleep and he looks so peaceful, I look at him and he looks so healthy yet has this foreign mass growing in his body. You know I don't even care how this affects me, how much I have to run around, what I have to do. I just want Micah happy and healthy. I will do anything needed to be done to just help him get better. I am so mad, so frustrated, so confused, so sad. But...I am still holding on, praying that there are no other masses. Praying that all that has to be done is surgery to take out the mass. Praying that Micah will recover and continue to grow and become a wonderful great little boy and then grow up to be an amazing young man. And you know not only does it make me angry that Micah is being hurt by all of this but Noah hasn't had it easy either. Noah doesn't understand what is going on, he doesn't understand why mommy and daddy have to go run around all over and leave him with babysitters. He doesn't understand why Micah has wires and tubes coming off of him. He doesn't understand any of this, all he knows is that his world is getting turned upside down as well.
But through this all I continue to keep my faith. I know God is with us. I know God is listening to all of our prayers. I know that Micah is in the best hands possible...God's. I know that God loves us very much and loves baby Micah more than I could ever even possibly describe. God is here with us, He will never leave us. This gives me comfort. While I may not understand why this is happening I do know that we are not alone.
Blessings
Melinda
But through this all I continue to keep my faith. I know God is with us. I know God is listening to all of our prayers. I know that Micah is in the best hands possible...God's. I know that God loves us very much and loves baby Micah more than I could ever even possibly describe. God is here with us, He will never leave us. This gives me comfort. While I may not understand why this is happening I do know that we are not alone.
Blessings
Melinda
No news is good news?
Hey everyone...well Micah had his CT scan today. It went well. They had a really hard getting the IV in and had to poke him quite a few times. Poor little guy, at least he was already knocked out for that. He also had to have a wonderful (not really) NG tube placed so they could give him the contrast for the test. He did okay with this, didn't like it but it made him feel like he was "full" which was a good thing since he wasn't able to eat anything since midnight.
As for right now we have no idea what the scans said. We haven't heard back from Dr.Bob (Micah's oncologist) yet. Seth called twice and they didn't have the test from the radiologist at that time and I just tried to call and the office is closed. So i'm thinking we are waiting till tomorrow to find out which is really frustrating but i'm hoping that no news means good news. Right now we are praying for no more masses. As for where we go from here....we have no idea. Surgery next week? Possibly. We did get the DVD of the scans so we can get a second opinion from Children's Hospital and Seth and I looked at them but it's like a foregin language to us and we have no idea what we are looking at.
Thank you all for your prayers and constant thoughts and words of encouragment. I promise to update as soon as I get the results.
Again please contiune to pray for no more masses!!!!!!
Blessings
Seth Melinda Noah and Micah!!!
As for right now we have no idea what the scans said. We haven't heard back from Dr.Bob (Micah's oncologist) yet. Seth called twice and they didn't have the test from the radiologist at that time and I just tried to call and the office is closed. So i'm thinking we are waiting till tomorrow to find out which is really frustrating but i'm hoping that no news means good news. Right now we are praying for no more masses. As for where we go from here....we have no idea. Surgery next week? Possibly. We did get the DVD of the scans so we can get a second opinion from Children's Hospital and Seth and I looked at them but it's like a foregin language to us and we have no idea what we are looking at.
Thank you all for your prayers and constant thoughts and words of encouragment. I promise to update as soon as I get the results.
Again please contiune to pray for no more masses!!!!!!
Blessings
Seth Melinda Noah and Micah!!!
Thursday, April 9, 2009
Prayers of Thanks
Two things for now:
One: I got a call from the Oncologist office this morning...all of Micah's blood work has come back great....nothing in them to be concerning!!! Yeah!!!!
Two: Micah is scheduled for his second CT scan on Monday the 13th. He will have a head CT and his kidneys CT'd. He again will have to undergo some minor anesthesia but hopefully we will find out more from these scans. We are praying there are no other masses in his little body! We have to be at the hospital by 8:15am and the test is at 11:15am...will update more about the CT come Monday (or whenever we get the results).
Please give up a prayer of Thanks for the blood work being good and a prayer that God will watch over Micah again during his CT scan and that there are no more masses!!!!!!
Blessings
Melinda
One: I got a call from the Oncologist office this morning...all of Micah's blood work has come back great....nothing in them to be concerning!!! Yeah!!!!
Two: Micah is scheduled for his second CT scan on Monday the 13th. He will have a head CT and his kidneys CT'd. He again will have to undergo some minor anesthesia but hopefully we will find out more from these scans. We are praying there are no other masses in his little body! We have to be at the hospital by 8:15am and the test is at 11:15am...will update more about the CT come Monday (or whenever we get the results).
Please give up a prayer of Thanks for the blood work being good and a prayer that God will watch over Micah again during his CT scan and that there are no more masses!!!!!!
Blessings
Melinda
Wednesday, April 8, 2009
Micah
As many of you already know alot has been going on with Micah for the past month and a half. For those of you who don't know the story I'll go ahead a post a short little tid bit of our journey up to today.
In February Micah got sick, we ended up taking him to the ER on February 20Th and he was diagnosed with RSV and bilateral pneumonia. Micah was admitted that same night. The dr. told us to not expect to go home until Monday (this was Friday night). While spending a few nights in the hospital is not really what we would consider "fun" we were okay with a few days. Well Monday came and went and Micah was still sick. Micah was getting over the RSV and pneumonia but was unable to keep his o2 stats up while sleeping. From what we were told a "healthy" person stays at 95% or higher someone who is sick can go into the low 90's but Micah continued to drop into the 60's, 70's, 80's and would jump into the 90's. We were told that in order to be discharged Micah had to be able to go all night without needing o2. This did not happen. We ended up being discharged 2 weeks from the day we were admitted. But along with going home we had to bring home o2 and a monitor for Micah to be on. The dr's were just hoping that it was the residual RSV that was causing him to drop his o2 while sleeping.
While at the hospital we also found out a few other things while they were trying to figure out why Micah was still dropping his o2 stats. He has silent reflux with aspirations, he also aspirates when he drinks his bottles. In order to fix these couple of things Micah is now on prevacid 2 times a day and sleeps at a 45 degree angle in his crib in a "tucker sling". We also thicken his formula with a product called "simply thick" to keep him from aspirating when swallowing.
After a few weeks the dr (who by the way is wonderful) decided it was time to move on to some other test. Micah was scheduled for a CT chest scan for this morning. These are pretty routine and we went into it thinking that they honestly wouldn't find anything and we'd still be clueless to why Micah continues to destat. Unfortunately this was not the case. The CT went great we were done and discharged by 9am and we came home. Around 1pm we received a phone call from Micah's pulmonologist. He told us that he had bad news. Micah has a mass in his chest and it looks like cancer. Yes the dreaded C word was dropped.
So we met with the oncologist today at 3pm. The oncologist is having another CT done on Monday (hopefully) they want to scan his brain and his kidneys to see if there are any other masses. He also wants to remove the mass in about two weeks.
Really this is all we know right now. I hope to find out more soon but am not sure when this is going to happen. I apologize for the quality of this post, I am exhausted and have had a long day. All we ask is for your prayers. We know that God is with us through this all. We have faith that the Lord is watching over Micah and that the dr's will "hopefully" figure out what is going on. I hope to continue to post when we get more news.
As for Seth and I. We are doing alright. Emotionally and physically exhausted but able to keep moving forward. We both are in crisis mode right now just trying to get things done and figure out what the next step is. Noah is doing wonderfully as well. Getting big and walking finally!!!!!
Blessings
Melinda, Seth, Noah, and Micah!
In February Micah got sick, we ended up taking him to the ER on February 20Th and he was diagnosed with RSV and bilateral pneumonia. Micah was admitted that same night. The dr. told us to not expect to go home until Monday (this was Friday night). While spending a few nights in the hospital is not really what we would consider "fun" we were okay with a few days. Well Monday came and went and Micah was still sick. Micah was getting over the RSV and pneumonia but was unable to keep his o2 stats up while sleeping. From what we were told a "healthy" person stays at 95% or higher someone who is sick can go into the low 90's but Micah continued to drop into the 60's, 70's, 80's and would jump into the 90's. We were told that in order to be discharged Micah had to be able to go all night without needing o2. This did not happen. We ended up being discharged 2 weeks from the day we were admitted. But along with going home we had to bring home o2 and a monitor for Micah to be on. The dr's were just hoping that it was the residual RSV that was causing him to drop his o2 while sleeping.
While at the hospital we also found out a few other things while they were trying to figure out why Micah was still dropping his o2 stats. He has silent reflux with aspirations, he also aspirates when he drinks his bottles. In order to fix these couple of things Micah is now on prevacid 2 times a day and sleeps at a 45 degree angle in his crib in a "tucker sling". We also thicken his formula with a product called "simply thick" to keep him from aspirating when swallowing.
After a few weeks the dr (who by the way is wonderful) decided it was time to move on to some other test. Micah was scheduled for a CT chest scan for this morning. These are pretty routine and we went into it thinking that they honestly wouldn't find anything and we'd still be clueless to why Micah continues to destat. Unfortunately this was not the case. The CT went great we were done and discharged by 9am and we came home. Around 1pm we received a phone call from Micah's pulmonologist. He told us that he had bad news. Micah has a mass in his chest and it looks like cancer. Yes the dreaded C word was dropped.
So we met with the oncologist today at 3pm. The oncologist is having another CT done on Monday (hopefully) they want to scan his brain and his kidneys to see if there are any other masses. He also wants to remove the mass in about two weeks.
Really this is all we know right now. I hope to find out more soon but am not sure when this is going to happen. I apologize for the quality of this post, I am exhausted and have had a long day. All we ask is for your prayers. We know that God is with us through this all. We have faith that the Lord is watching over Micah and that the dr's will "hopefully" figure out what is going on. I hope to continue to post when we get more news.
As for Seth and I. We are doing alright. Emotionally and physically exhausted but able to keep moving forward. We both are in crisis mode right now just trying to get things done and figure out what the next step is. Noah is doing wonderfully as well. Getting big and walking finally!!!!!
Blessings
Melinda, Seth, Noah, and Micah!
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