We had an awesome weekend. We finally got to go out of town for the weekend. It was so great to see friends from both high school and college and to see all my family. We went to Kingwood for our good friends surprise 30th birthday party and it was such an great reunion of old friends. My uncle brought my grandma to Kingwood to meet Carson for the first time, which was another very special moment. It was so great to not have to think of all the doctors and medical stuff and just get to enjoy the weekend with people that I love.
Today we went to the Pediatric GI doctor for the blood in Carson's stools. He was wonderful if anyone is ever needing a GI doctor. After listening to me explain what was going on and doing an exam he said it was one of two things, both minor. YAY, for something final being minor. One is that it still could be an allergy of some sort, but it would be really minor since he isn't really having any other major symptoms. They really don't have anyway of knowing what it is and I could try a allergy free milk, but he doesn't really know if it will help and would rather him get the breast milk. Since being off of dairy wasn't helping he said I could enjoy it again...YAY again. Now he did say if he gets worse when I get back on it to get off of it again. The Second thing that could be causing it had some big fancy name (as he put it) but it basically means large lymph nodes, small hole. Babies have large lymph nodes as their body develops it immune system and their intestines are really small so the bowel can rub up against them and cause the streaking of blood. He said as long as the blood is random, doesn't get worse, and Carson seems fine we just keep doing what we are doing. The Dr. believes that either scenario will be out grown around 6 months. I really hope this is true. Praise for good news today. Ha, For now, I am going to ignore the fact that he still has blood in the stools on occasion and just be thankful that it isn't anything major.
Many of you have been asking about supporting the Buddy Walk in Carson's name. One way to do it is to order something from www.pamperedchef.biz/dhawks and enter Buddy Walk as the Organization and a percentage will be donated to the Buddy Walk or you can donate online at https://bos.etapestry.com/fundraiser/DownSyndromeGuildofDallas/BuddyWalk2011/individual.do?participationRef=607.0.364785124. If any of you happen to be in the area we would love for you to join us for the walk on November 13.
As always thanks for all the love and prayers.
Monday, October 17, 2011
Tuesday, October 11, 2011
Cardiologist, Pediatrician, and Urologist....OH MY!!
Excuse the lame title. It is my attempt to keep things upbeat. I am having one of those days where I just wish it would all go away. The health issues, the Downs (I always feel guilty saying this one, but I have to be honest. One day I know it will be part of who he is and I will come to fully accept it, but I am not there yet), the doctors appointments, and the emotions that go with it all. I just want a healthy, happy baby that doesn't have to go through all of this. Looking at Carson you would never know all the health issues he is dealing with. He is the easiest, happiest, sweetest baby I know and it breaks my heart that he has to deal with all this. I keep praying to God for understanding on why he has to deal with so much. I also know things could be worse and try to count my blessings where we can find them. He is such a joy and I know he will not only continue to bless us but so many others.
Last week we saw the cardiologist. Things seems to be going pretty good on that end. They didn't do another echo, but after listening to the heart everything sounds good. We are thinking heart surgery closer to 1 year of age.
We also saw the pediatrician for Carson's 2 month check up. He has doubled his weight in two months!! We no longer have to fortify his milk. He is still having blood in his stools even with me off of dairy so we have to go see a GI doctor next Monday. Please pray this is something minor. The doctors do not seem very worried since he seems fine otherwise, but Mom is. He weighs 10lbs and is 21.3 inches. He is in the 50% percentile for weight and 25% for height on the trisomy 21 chart. He is on the 10-25% for weight and 10% for height on the typical chart. Trisomy 21 kiddos have their own growth chart so the doctor charts him on both charts.
Today we saw the urologist and come away feeling frustrated. Mainly because we were hoping for a definite answer to what was going to be done for the kidney and instead we found out they don't really know much more than we started with. We know the kidney is blocked, but we don't know where and we know it is functioning, but we aren't sure how much. The scan said 42% but the doctor seems to think it is closer to 20-25%. Sooo we have to do more testing. They are wanting to do a retrograde pylogram on him and a biopsy of some sort on the kidney. The question is whether to do the procedure and surgery together or do the procedure, digest the results, and than do the surgery at another time.
Carson is really such a huge blessing in our lives. He is such a special part of our family. His big sister Kaylee just adores him and we love seeing the two of them together. Carson has started smiling and it is sooo awesome to start to see his little personality develop.
Last week we saw the cardiologist. Things seems to be going pretty good on that end. They didn't do another echo, but after listening to the heart everything sounds good. We are thinking heart surgery closer to 1 year of age.
We also saw the pediatrician for Carson's 2 month check up. He has doubled his weight in two months!! We no longer have to fortify his milk. He is still having blood in his stools even with me off of dairy so we have to go see a GI doctor next Monday. Please pray this is something minor. The doctors do not seem very worried since he seems fine otherwise, but Mom is. He weighs 10lbs and is 21.3 inches. He is in the 50% percentile for weight and 25% for height on the trisomy 21 chart. He is on the 10-25% for weight and 10% for height on the typical chart. Trisomy 21 kiddos have their own growth chart so the doctor charts him on both charts.
Today we saw the urologist and come away feeling frustrated. Mainly because we were hoping for a definite answer to what was going to be done for the kidney and instead we found out they don't really know much more than we started with. We know the kidney is blocked, but we don't know where and we know it is functioning, but we aren't sure how much. The scan said 42% but the doctor seems to think it is closer to 20-25%. Sooo we have to do more testing. They are wanting to do a retrograde pylogram on him and a biopsy of some sort on the kidney. The question is whether to do the procedure and surgery together or do the procedure, digest the results, and than do the surgery at another time.
Carson is really such a huge blessing in our lives. He is such a special part of our family. His big sister Kaylee just adores him and we love seeing the two of them together. Carson has started smiling and it is sooo awesome to start to see his little personality develop.
Friday, September 30, 2011
A little someting positive to take us into the weekend.
Yesterday I officially became the crazy mom who showed up at the doctors office with no appointment and a dirty diaper. Carson had more blood in his stools yesterday and I had a call into the doctor, but decided just to stop by after dropping Kaylee off at preschool. They made me feel less crazy by telling me I made the right decision. The doctor took Carson's diaper to run some test and put me back off of dairy to see if it is the protein allergy. As hard as it is for me to go off of dairy, this would be an easy fix. It is also hard to think of all the milk in the freezer, but I was told not to get rid of anything yet. We don't know for sure what is causing the bleeding, but this is a first step and we can always revisit dairy slowly as he gets older. Prayers for whatever is causing the bleeding to heal and for Carson to have some relief.
Sooo excited to get good news today. I finally heard back from the urologist who reviewed the film from the Lasix Renal Scan. He said they got enough information from it for us to not have to re-do it. Praise God!!! The urologist also said he saw in the films that the kidney IS functioning (another praise :) ), but it is very blocked. We will go on the 11th to review the films with the doctor and discuss surgery options. This sounds crazy and may be a stretch, but the blood in Carson's stool, while very scary, has been a small blessing in disguise. Had we not found the blood in his stools on Tuesday we would have re-done the scan for nothing. I feel God working and it gives me a little something positive to take into the weekend.
Sooo excited to get good news today. I finally heard back from the urologist who reviewed the film from the Lasix Renal Scan. He said they got enough information from it for us to not have to re-do it. Praise God!!! The urologist also said he saw in the films that the kidney IS functioning (another praise :) ), but it is very blocked. We will go on the 11th to review the films with the doctor and discuss surgery options. This sounds crazy and may be a stretch, but the blood in Carson's stool, while very scary, has been a small blessing in disguise. Had we not found the blood in his stools on Tuesday we would have re-done the scan for nothing. I feel God working and it gives me a little something positive to take into the weekend.
Wednesday, September 28, 2011
Updates
Well I waited to write this in hopes to have more of a positive attitude about everything. This week has been really hard on all of us. Especially poor Carson though. On Monday we had the scan done on Carson. First they put in an IV and had to hydrate him for an hour. He was such a trooper and didn't even cry when the put in the IV. It took me everything not to cry for him. He was more frustrated with his arm being taped down. After an hour they put in his catheter. Which was a little more traumatic for all of us. Then the poor baby has to lay still for an hour. Thank God he fell asleep. This scan ended up taken pretty much the whole day by the time it was all said and done with.
On my way to pick up Kaylee from a friend's house, I received a call from the hospital that we needed to come the next day to re-do the scan because they needed to confirm something they were seeing. Needless to say I was scared to death. I had to call the urologist to cancel my Tuesday morning follow up appointment and was given some relief from the nurse who was puzzled why they would make us come back and told me if it was something serious they would have contacted the doctor. After Charles spoke with someone else we realized this was something done wrong on the testing not with Carson. Thank God, but still very upset to have to redo this procedure.
The next day we went about our day planning to get to the hospital around 2pm to redo the scan. While changing Carson's diaper I noticed some blood in his diaper. This concerned me and I wanted to make sure it wasn't something serious. The scan got delayed and the pediatrician wanted to see him first thing Wednesday morning. They were concerned it may be a possible protein intolerance. I was told to stay off of dairy for the rest of the day (ha, anyone who knows me knows how hard this was for me). I was also so upset at the thought of him not being about to get the tons of breast milk I have been pumping and saving. They did not think the blood in the stool was related to the scan.
Today we went to the pediatrician to see what was causing the bleeding. Needless to say we don't really know why it happened but there was no blood today and we are having to watch him carefully for any other signs and make sure there is no more blood. By the time we got done with the pediatrician I was done with doctors for the day. We still need to reschedule the scan but I just didn't have it in me to call today. I am hoping to get some more answers about the scan and then schedule to re-do it as soon as I am absolutely sure we have to. I really don't want to have to put him through all that again.
Prayers please for all of us. It has been a hard week. I am trying to give it all to God and I feel like more keeps piling on. I feel like my check list is growing and nothing is getting checked off. I just pray everyday for us to get through all of Carson's health issues. I hate that he has to go through so much. I will be so happy the day he gets a clean bill of health.
On my way to pick up Kaylee from a friend's house, I received a call from the hospital that we needed to come the next day to re-do the scan because they needed to confirm something they were seeing. Needless to say I was scared to death. I had to call the urologist to cancel my Tuesday morning follow up appointment and was given some relief from the nurse who was puzzled why they would make us come back and told me if it was something serious they would have contacted the doctor. After Charles spoke with someone else we realized this was something done wrong on the testing not with Carson. Thank God, but still very upset to have to redo this procedure.
The next day we went about our day planning to get to the hospital around 2pm to redo the scan. While changing Carson's diaper I noticed some blood in his diaper. This concerned me and I wanted to make sure it wasn't something serious. The scan got delayed and the pediatrician wanted to see him first thing Wednesday morning. They were concerned it may be a possible protein intolerance. I was told to stay off of dairy for the rest of the day (ha, anyone who knows me knows how hard this was for me). I was also so upset at the thought of him not being about to get the tons of breast milk I have been pumping and saving. They did not think the blood in the stool was related to the scan.
Today we went to the pediatrician to see what was causing the bleeding. Needless to say we don't really know why it happened but there was no blood today and we are having to watch him carefully for any other signs and make sure there is no more blood. By the time we got done with the pediatrician I was done with doctors for the day. We still need to reschedule the scan but I just didn't have it in me to call today. I am hoping to get some more answers about the scan and then schedule to re-do it as soon as I am absolutely sure we have to. I really don't want to have to put him through all that again.
Prayers please for all of us. It has been a hard week. I am trying to give it all to God and I feel like more keeps piling on. I feel like my check list is growing and nothing is getting checked off. I just pray everyday for us to get through all of Carson's health issues. I hate that he has to go through so much. I will be so happy the day he gets a clean bill of health.
Sunday, September 25, 2011
Latest Updates
Last Thursday ECI (Early Childhood Intervention) came out to evaluate Carson. It was great to feel like we are getting the ball moving with early intervention. Because of Carson's prematurity they were looking at him like he was a week old, instead of almost 7. He only qualified for PT for 30 mins every other week. This is both a good and bad thing. You want him to get all the services possible, but it is great that he does not currently need them. He will be reevaluated in 6 months.
On Tuesday we had our first PT session she worked with Carson on holding his head up, turning his head, and flexed posture.
This weekend was a fun packed one for us. We had 2 parties on Friday one for Kaylee and one for Mommy. Then Saturday we had dentist appointments then we went to the arboretum for a picnic lunch. We enjoyed all the beautiful fall decorations and pumpkins. Kaylee loved the Cinderella theme. That night we had some friends over for dinner. They were sweet enough to bring dinner to us. We were supposed to get together the day before I went into labor and I wasn't feeling good. Ha, little did we know Carson would be born the next day. Today we went to church and a family picnic with the Down's group we are part of. It is always good to be around families that get what you are going through.
Tomorrow we have a Renal Scan MAG-3 W Lasix Washout. The Lasix Renal Scan is a series of pictures that will record how much the kidneys function and how they are formed. It is a nuclear medicine test. The test will basically let us know why Carson has the hydronephrosis (enlarged) left kidney. The results will let us know what surgery Carson will undergo. Prayers please. We will go on Tuesday to talk to the urologist about the results. The reality of the surgeries to come are starting to set in. Please pray for strength for all of us and a miracle would be nice too ;).
On Tuesday we had our first PT session she worked with Carson on holding his head up, turning his head, and flexed posture.
This weekend was a fun packed one for us. We had 2 parties on Friday one for Kaylee and one for Mommy. Then Saturday we had dentist appointments then we went to the arboretum for a picnic lunch. We enjoyed all the beautiful fall decorations and pumpkins. Kaylee loved the Cinderella theme. That night we had some friends over for dinner. They were sweet enough to bring dinner to us. We were supposed to get together the day before I went into labor and I wasn't feeling good. Ha, little did we know Carson would be born the next day. Today we went to church and a family picnic with the Down's group we are part of. It is always good to be around families that get what you are going through.
Tomorrow we have a Renal Scan MAG-3 W Lasix Washout. The Lasix Renal Scan is a series of pictures that will record how much the kidneys function and how they are formed. It is a nuclear medicine test. The test will basically let us know why Carson has the hydronephrosis (enlarged) left kidney. The results will let us know what surgery Carson will undergo. Prayers please. We will go on Tuesday to talk to the urologist about the results. The reality of the surgeries to come are starting to set in. Please pray for strength for all of us and a miracle would be nice too ;).
Tuesday, September 13, 2011
6 weeks old
Carson is now 6 weeks old and continues to be doing well. This little man is such a fighter. He is really starting to have longer wake periods and is starting to hold his head up some. He is not a fan of tummy time...but we work him hard. He is filling out and and is now completely out of his preemie clothes.
We had a fun time on Saturday at the hospital's NICU reunion. It was neat to see several of the nurses that took care of Carson while he was in there. Kaylee had a blast playing games, getting her face painted, and riding the train. Carson also had a great time as he slept through the whole thing.
Carson has his evaluation with ECI on Thursday and his kidney imagery procedure on the 26th. We are anxiously awaiting the results of both of these appointments. Prayers please for wisdom to do whatever we need to for Carson's health and development.
Here are some of the recent updates from doctor's appointments:
On Thursday, August 25th, we had a cardiologist appointment and received the news that his VSD (hole in his heart) is a lot smaller than they originally thought and he may not go into congestive heart failure. He still will need heart surgery, but we may get to wait until he is 6-12 months instead of the original 4-6 months. The bigger he is the better. Praise God for something positive :)
On September 7th, Mr. Carson's original due date, we had his one month check-up. He was a little over 5 weeks old. He weighs 7lbs. 6oz. and is doing well.
It is amazing to us all the little things we are so thankful for with our little Carson. We also have realized all the things we take for granted in the development of a child. Every milestone is so huge for us with him and we realize we shouldn't take that for granted with anyone. We should take time to appreciate all the small things in life as well as the big.
We had a fun time on Saturday at the hospital's NICU reunion. It was neat to see several of the nurses that took care of Carson while he was in there. Kaylee had a blast playing games, getting her face painted, and riding the train. Carson also had a great time as he slept through the whole thing.
Carson has his evaluation with ECI on Thursday and his kidney imagery procedure on the 26th. We are anxiously awaiting the results of both of these appointments. Prayers please for wisdom to do whatever we need to for Carson's health and development.
Here are some of the recent updates from doctor's appointments:
On Thursday, August 25th, we had a cardiologist appointment and received the news that his VSD (hole in his heart) is a lot smaller than they originally thought and he may not go into congestive heart failure. He still will need heart surgery, but we may get to wait until he is 6-12 months instead of the original 4-6 months. The bigger he is the better. Praise God for something positive :)
On September 7th, Mr. Carson's original due date, we had his one month check-up. He was a little over 5 weeks old. He weighs 7lbs. 6oz. and is doing well.
It is amazing to us all the little things we are so thankful for with our little Carson. We also have realized all the things we take for granted in the development of a child. Every milestone is so huge for us with him and we realize we shouldn't take that for granted with anyone. We should take time to appreciate all the small things in life as well as the big.
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