Yesterday we met with Dr. Benzick. I wanted to fill him in on our week in Houston and he needed to check Alex's incision. As always, he was incredibly supportive. He is such a blessing in our lives. I am thankful every day that we chose him as our pediatrician before we knew what would be facing us. Through this whole roller coaster ride he has stood shoulder to shoulder with us, always putting Alex's well being before anything else. I love that he is not afraid to admit that he doesn't know everything and is willing to work with our specialists for Alex's benefit. It is so rare to find a Doctor like this. He agreed with everything we learned in Houston. He thought the port was a good idea which put my mind at ease. he is excited to consult with Dr. Koenig on the best treatment for Alex.
We are almost all the way through the "formalities" of the MDCP program. Our application and medicaid application are through. Our overnight should be either this week or next week. After our overnight, services have to start within 24 hours. We had a home health care agency come out yesterday. We are going to have a nurse all day Tuesday and Thursday. I really wanted 3 half days but I spoke to numerous companies and no one was able to staff that. It will be nice for Alex and I have to have a little break a couple times a week.
Alex's port surgery is scheduled for March 12th. We will travel to Houston on the 9th or 10th. We will be admitted on the 11th and discharged on the 13th. While we are there we will see Dr. Koenig, the immunologist, the GI and possibly the endocrinologist. Then we are home for 2 weeks and head out to cincinnati! So March will be BUSY!!!!!
Please pray for all of us. I am trying not to think to far ahead. We have a long wait till we get results but some of the possibilities are scary. I am trying to keep my head in the moment and be thankful for each day. The stress of almost four years of medical and financial strain is taking its toll on me. I am tired and have stress knots in my back and neck. I really feel like the answers we have so desparately searched for are almost here. I am just not sure I like them!
Thank you for the constant support and prayers.
Ali
Alex and Maddy
Wednesday, February 27, 2008
Sunday, February 24, 2008
Just a real quick update-
Alex is doing wonderful! He is up and walking. He has a very slight limp. He is so happy to be home. I don't think he has left his playroom since we got home. Alex and Bruce played really well together yesterday. So I was able to catch up on things around the house. I even got a nap!!! We have an appt with Dr. Benzick on Tuesday. he will look at Alex's leg to make sure it is healing well. We will also discuss everything from our trip. Lastly, we need to draw more blood. Unfortunately, after the IV situation there were no more veins to draw blood out of and they were scared to pull off the IV line. If we had lost that IV we would have had no way to get fluids into him. Hopefully, these will be the last sticks other then the IV for his port surgery.
I may update later with more info about the port for those of you who are interested.
One last bit of good news. I got a message while I was away that our medicaid went through. So I will call Monday and find out. As soon as we spend the night in the nursing home our medicaid and nursing care should start.
I'll keep you updated!
Alex is doing wonderful! He is up and walking. He has a very slight limp. He is so happy to be home. I don't think he has left his playroom since we got home. Alex and Bruce played really well together yesterday. So I was able to catch up on things around the house. I even got a nap!!! We have an appt with Dr. Benzick on Tuesday. he will look at Alex's leg to make sure it is healing well. We will also discuss everything from our trip. Lastly, we need to draw more blood. Unfortunately, after the IV situation there were no more veins to draw blood out of and they were scared to pull off the IV line. If we had lost that IV we would have had no way to get fluids into him. Hopefully, these will be the last sticks other then the IV for his port surgery.
I may update later with more info about the port for those of you who are interested.
One last bit of good news. I got a message while I was away that our medicaid went through. So I will call Monday and find out. As soon as we spend the night in the nursing home our medicaid and nursing care should start.
I'll keep you updated!
Friday, February 22, 2008
WE ARE HOME!!!!
We left this morning, dropped Janette and Monty off at the airport and headed home. We got in about 4:00. We are tired, but glad to be in our own space and ready to be in our own beds.
I took the dressing off Alex's leg today and it looks pretty good. It is about an inch and a half and just a thin line. It still has steri strips on it. He is doing great. Still not putting any weight on it, but trying to move around.
We will head back to Houston in about three weeks. At that time we will see Dr. Koenig again. We will also see the immunologist again, a GI and endocrinologist. The main reason for going is so Alex can have a port placed. It is a small disc under his skin near his collarbone. It has a line that will go into one of his large veins. The top of the disc is soft rubber. We will be able to use a small needle and start an IV or draw blood without having to poke and prod a hundred times. It will also allow us to give IV meds at home should the need arise. It is a very minor surgery. About the same scope as the muscle biopsy. We will spend 2 nights in the hospital. The night before and after the surgery. The main reason for the night before is so we don't have to sit and wait in the waiting room for 8 hours again, carrying around all our stuff! It also allows us to start an IV the night before so we don't have to worry about his blood sugar.
Test results will start coming in next week and will come in intil the biopsy comes back in about 8 weeks. Please pray for my sanity during this time of waiting!
Ali
We left this morning, dropped Janette and Monty off at the airport and headed home. We got in about 4:00. We are tired, but glad to be in our own space and ready to be in our own beds.
I took the dressing off Alex's leg today and it looks pretty good. It is about an inch and a half and just a thin line. It still has steri strips on it. He is doing great. Still not putting any weight on it, but trying to move around.
We will head back to Houston in about three weeks. At that time we will see Dr. Koenig again. We will also see the immunologist again, a GI and endocrinologist. The main reason for going is so Alex can have a port placed. It is a small disc under his skin near his collarbone. It has a line that will go into one of his large veins. The top of the disc is soft rubber. We will be able to use a small needle and start an IV or draw blood without having to poke and prod a hundred times. It will also allow us to give IV meds at home should the need arise. It is a very minor surgery. About the same scope as the muscle biopsy. We will spend 2 nights in the hospital. The night before and after the surgery. The main reason for the night before is so we don't have to sit and wait in the waiting room for 8 hours again, carrying around all our stuff! It also allows us to start an IV the night before so we don't have to worry about his blood sugar.
Test results will start coming in next week and will come in intil the biopsy comes back in about 8 weeks. Please pray for my sanity during this time of waiting!
Ali
Thursday, February 21, 2008
I am so sorry I didn't update yesterday. I am just so tired. And my brain is going crazy trying to digest all the information we have received this week. I leave here this week feeling like we finally have a pretty good handle on things. Dr. Koenig is the most understanding, compassionate, knowledgeable doctor we have ever had the opportunity to meet.
He managed to make things interesting again yesterday. We were finally able to leave the hospital around 4:00. We no sooner got back to the hotel and he felt warm. His temp was 102.7!!! I called and they told us we could try and stick it out at home. His temp broke over night. His leg hurts, but otherwise he is doing well. He is on no pain meds.
What we know so far: Alex most likely has a mitochondrial disorder. We will have the biopsy results back in 6-8 weeks. His brain, heart and eyes are not being effected. Which is wonderful news. We will continue to monitor all these systems, but for now we'll take it. His muscles, GI tract and pancreas are being effected. There is also a chance that his liver may be. We are looking into this.
His bloodwork, testing and all symptoms are leading Dr. Koenig to believe we have found our answer. It will be a relief to me to stop searching for the why and be able to focus on what now.
As for Alex...he is absolutely incredible. He is such a joy and blessing to everyone who meets him. God has given this child a spirit that is strong and loving. He goes through so much and comes out smiling. After 17 sticks and surgery on Tuesday, he still managed to say "I got an owie, but I still like this hospital".
Thank you for all your prayers.
Ali
He managed to make things interesting again yesterday. We were finally able to leave the hospital around 4:00. We no sooner got back to the hotel and he felt warm. His temp was 102.7!!! I called and they told us we could try and stick it out at home. His temp broke over night. His leg hurts, but otherwise he is doing well. He is on no pain meds.
What we know so far: Alex most likely has a mitochondrial disorder. We will have the biopsy results back in 6-8 weeks. His brain, heart and eyes are not being effected. Which is wonderful news. We will continue to monitor all these systems, but for now we'll take it. His muscles, GI tract and pancreas are being effected. There is also a chance that his liver may be. We are looking into this.
His bloodwork, testing and all symptoms are leading Dr. Koenig to believe we have found our answer. It will be a relief to me to stop searching for the why and be able to focus on what now.
As for Alex...he is absolutely incredible. He is such a joy and blessing to everyone who meets him. God has given this child a spirit that is strong and loving. He goes through so much and comes out smiling. After 17 sticks and surgery on Tuesday, he still managed to say "I got an owie, but I still like this hospital".
Thank you for all your prayers.
Ali
Tuesday, February 19, 2008
As usual nothing went as planned today. I should know to expect the unexpected by now! We had to be at the hospital at 6:30. At 2:00, Alex was taken into surgery. It was a really long, hard morning. Hours of sitting around and waiting. We saw the immunologist, but she didn't give us any new information. The immunological disorder they thought he might have has been pushed to the back. At this point they don't think that is what is wrong. Dr. Koenig feels pretty strongly that Alex does have a mitochondrial disorder. Alex came through surgery and his MRI fine.
We finally got up to a room around 7:30. We started his feedings and within 15 minutes, his stomach was extremely distended. We were told to stop feedings. At the same time they realized that both his IV lines were blown and his ankle and leg were swollen quite a bit. So after 12 sticks in the OR, they had to call in the transport team to start another IV. The transport team is the top notch team for starting IV's in tricky patients. It took them 5 sticks and much digging. They finally got an IV started. The nurses and transport team are recommending that we do a port. We will discuss this with Dr. Koenig in the morning. We cannot continue to do this though. Everytime Alex needs an IV or a blood draw, he needs to be stuck multiple times.
Tomorrow we will see Dr. Koenig again as well as a dietician.
I will update again tomorrow.
Thanks for all your prayers.
Ali
We finally got up to a room around 7:30. We started his feedings and within 15 minutes, his stomach was extremely distended. We were told to stop feedings. At the same time they realized that both his IV lines were blown and his ankle and leg were swollen quite a bit. So after 12 sticks in the OR, they had to call in the transport team to start another IV. The transport team is the top notch team for starting IV's in tricky patients. It took them 5 sticks and much digging. They finally got an IV started. The nurses and transport team are recommending that we do a port. We will discuss this with Dr. Koenig in the morning. We cannot continue to do this though. Everytime Alex needs an IV or a blood draw, he needs to be stuck multiple times.
Tomorrow we will see Dr. Koenig again as well as a dietician.
I will update again tomorrow.
Thanks for all your prayers.
Ali
Monday, February 18, 2008
Just a quick update before tomorrow!
We saw opthamology today. Alex's eyes are perfect. At least something isn't messed up!!!! They don't need to see him back for two years unless we see any problems.
We also met with the surgeon. We go in tomorrow morning about 7:30. Surgery will be sometime between 11 and 12 followed by his MRI/MRS.
I will try and update tomorrow.
Keep us in your prayers.
Ali
We saw opthamology today. Alex's eyes are perfect. At least something isn't messed up!!!! They don't need to see him back for two years unless we see any problems.
We also met with the surgeon. We go in tomorrow morning about 7:30. Surgery will be sometime between 11 and 12 followed by his MRI/MRS.
I will try and update tomorrow.
Keep us in your prayers.
Ali
Friday, February 15, 2008
I am going to do my best to fill you in. My brain is mush. This morning we got to the hospital around 10:00. We had to pre register for surgery and meet with anesthesia. They did a very thorough history. We left there around 12:30 and headed to Dr. Koenig's. We ran into one of the girls I have been corresponding with online. That was neat and we had a few minutes to chat.
Dr. Koenig was INCREDIBLE!!!! She spent almost 2 hours with us. She answered a bunch of questions and brought up some new stuff, but until the testing is done she can't give us a ton of info.
She did verify that sugar is not good for Alex. She explained it...Alex's body doesn't break down sugar correctly which causes sugar to build up in his system. So when Alex eats one lollipop it is like a normal kid eating 8. Explains why he was such a monster!
The immunologist (who we will see on Tuesday) thinks it is possible that Alex may have a VERY rare (like 1 in 500,000) disorder. After we talk to the immunologist they will do some more testing on that.
So we have two days to catch our breath and enjoy ourselves before the craziness starts again on Monday.
We also have moved to a hotel. I'll explain tomorrow when I am more coherent.
Ali
Dr. Koenig was INCREDIBLE!!!! She spent almost 2 hours with us. She answered a bunch of questions and brought up some new stuff, but until the testing is done she can't give us a ton of info.
She did verify that sugar is not good for Alex. She explained it...Alex's body doesn't break down sugar correctly which causes sugar to build up in his system. So when Alex eats one lollipop it is like a normal kid eating 8. Explains why he was such a monster!
The immunologist (who we will see on Tuesday) thinks it is possible that Alex may have a VERY rare (like 1 in 500,000) disorder. After we talk to the immunologist they will do some more testing on that.
So we have two days to catch our breath and enjoy ourselves before the craziness starts again on Monday.
We also have moved to a hotel. I'll explain tomorrow when I am more coherent.
Ali
Thursday, February 14, 2008
Very quick update. I am exhausted!
Tomorrow we have a pre op appt and the main appt with the neurologist who is the mito specialist.
Monday we have an opthmalogy appt and the consult with the surgeon.
Tuesday we have our surgery and our MRI/MRS. We will be in the hospital overnight. Also at some point on Tuesday the immunologist will come to the hospital to see us.
We will be home Thursday or Friday if nothing changes.
I will update tomorrow after our appts.
Ali
Tomorrow we have a pre op appt and the main appt with the neurologist who is the mito specialist.
Monday we have an opthmalogy appt and the consult with the surgeon.
Tuesday we have our surgery and our MRI/MRS. We will be in the hospital overnight. Also at some point on Tuesday the immunologist will come to the hospital to see us.
We will be home Thursday or Friday if nothing changes.
I will update tomorrow after our appts.
Ali
Tuesday, February 12, 2008
I have a ton to update...
We have stopped letting Alex eat lollipops and my sweet boy has returned. The monster has left the building. I can't remember if I posted about this, but Liz his therapist had arranged for Alex to get a tricycle that exercises his arms and legs. We got to bring that home today so that was really exciting. When we get back from Houston I will take a picture. Otherwise, Alex seems to be doing well. He loves to get out and see his friends.
Next week will be crazy!!!! I just heard from the clinical coordinator in Houston. Alex is scheduled for testing /appts then he has ever had. While in Houston we will see the neurologist, a surgeon, an endocrinologist, an immunologist, and an opthamologist. They will run a ton of bloodwork, do an MRI/MRS of his brain, and a muscle biopsy. Poor little guy! Talk about being put through the ringer.
It is so nice to have one Dr. interested in Alex and coordinating all of his care. I am really anticipating all we can learn.
We are also excited to see old friends and meet new ones.
Please pray for our safe travel and for Alex to hold up during all the testing.
Love,
Ali
We have stopped letting Alex eat lollipops and my sweet boy has returned. The monster has left the building. I can't remember if I posted about this, but Liz his therapist had arranged for Alex to get a tricycle that exercises his arms and legs. We got to bring that home today so that was really exciting. When we get back from Houston I will take a picture. Otherwise, Alex seems to be doing well. He loves to get out and see his friends.
Next week will be crazy!!!! I just heard from the clinical coordinator in Houston. Alex is scheduled for testing /appts then he has ever had. While in Houston we will see the neurologist, a surgeon, an endocrinologist, an immunologist, and an opthamologist. They will run a ton of bloodwork, do an MRI/MRS of his brain, and a muscle biopsy. Poor little guy! Talk about being put through the ringer.
It is so nice to have one Dr. interested in Alex and coordinating all of his care. I am really anticipating all we can learn.
We are also excited to see old friends and meet new ones.
Please pray for our safe travel and for Alex to hold up during all the testing.
Love,
Ali
Thursday, February 7, 2008
I received two quotes yesterday that really made me think about how special life with Alex is, so I thought I would share them.
The first was written by a mother of a child with mito:
Their spirit amazes you every day. They have such strength. Each day they teach you that you have so much more strength then you ever knew you had. They teach you things about the human spirit and experience that you would never have known existed if everything was okay. They teach you to sweat the small stuff because each one of those little things is so priceless.
The second was from an email:
God's will never takes you where God's grace cannot protect you.
I really strive each day to find the good in our situation. And I look it in the eyes every day. The Good is that little angel that God bleesed me with who could light up a room with his smile and bring a smile to your face with his contagious laugh. The good is also in all of you. God has put each of you into my path to share this journey. To be there for the good days and the bad. I am truly thankful for each and every one of you!
The first was written by a mother of a child with mito:
Their spirit amazes you every day. They have such strength. Each day they teach you that you have so much more strength then you ever knew you had. They teach you things about the human spirit and experience that you would never have known existed if everything was okay. They teach you to sweat the small stuff because each one of those little things is so priceless.
The second was from an email:
God's will never takes you where God's grace cannot protect you.
I really strive each day to find the good in our situation. And I look it in the eyes every day. The Good is that little angel that God bleesed me with who could light up a room with his smile and bring a smile to your face with his contagious laugh. The good is also in all of you. God has put each of you into my path to share this journey. To be there for the good days and the bad. I am truly thankful for each and every one of you!
Wednesday, February 6, 2008
Some more good news...
I heard from the coordinator for the Medically Dependent Children's Program. Alex was approved at the highest level. We are just waiting on the medicaid application to get through now. We were given a $31,000/yr budget from MDCP for respite nursing care. We could get more nursing from Medicaid. I am looking into whether some of that budget can be used to pay myself since I can't work because of Alex's health. That would be a HUGE blessing.
We also heard from Gayla, Dr. K's coordinator. I should know tomorrow what tests they are planning on doing while we are there. If they want to do the muscle biopsy this trip, it will be done on the 20th and we will be inpatient until the 21st.
I'm sure I'll have more to update later!
Ali
I heard from the coordinator for the Medically Dependent Children's Program. Alex was approved at the highest level. We are just waiting on the medicaid application to get through now. We were given a $31,000/yr budget from MDCP for respite nursing care. We could get more nursing from Medicaid. I am looking into whether some of that budget can be used to pay myself since I can't work because of Alex's health. That would be a HUGE blessing.
We also heard from Gayla, Dr. K's coordinator. I should know tomorrow what tests they are planning on doing while we are there. If they want to do the muscle biopsy this trip, it will be done on the 20th and we will be inpatient until the 21st.
I'm sure I'll have more to update later!
Ali
Tuesday, February 5, 2008
Alex is still not quite back to himself. For about 3 weeks now, he has just been off. Nothing I can put my finger on, just different. He is still sleeping a ton, he has been really pale, his eyes don't look quite right. He isn't sick though so we don't know what to make of it.
We are so excited to go to Houston next week and hopefully start getting answers to all of our questions. The Dr. we are seeing has gotten INCREDIBLE feedback/reviews from the parents who have seen her. She is very parent/patient friendly and really cares about these kids. Dr's like this seem to be a dying breed, believe me!
Alex has been having a really rough time in therapy the last few weeks. Elizabeth and I have talked about it. We think some of it, is about wanting control, but some of it is just lack of energy. He has no desire to do anything that requires stamina. His frustration level is incredibly high right now. Once again, I think he just doesn't feel great, but we aren't sure why. Elizabeth is great with him. Her and I have the same temperment/philosophy. We both push him to do what he must, but in a loving way. Sometimes you just want to pick him up and hug him though. It is such a struggle for him at times. As a mother, I just want to make things easier sometimes even though I know it isn't in his best interest.
We had an endocrinology appt this morning. He looked at me and said," I'm really confused...I don't know why they sent you here". AHHHH! So he wants to talk to us/possibly see us back after we see the Dr. in Houston. Some of the testing he would normally do is contraindicated in kids with metabolic disorders so he wants Dr. K to decide what should/should not be tested. As always, the office staff loved Alex. Every where we go everyone falls in love with this little guy!
I changed Alex's button for the first time today! Alex did great (and so did Mommy)! I was a little nervous, but it was really easy. His belly looked so funny with just a hole and nothing there. Good thing we aren't squeamish! I made Bruce take pictures. But I won't torture everyone by posting that!
I am working with the pastor of caring and concern at our church to start a support group for parents of children with chronic health care needs. I meet with Leslie tomorrow and then we will put something in the church newsletter. There is definitely something special between Moms whose kids have to go through so much. We go through so many of the same struggles, physically, emotionally, and financially. It is a very different friendship then "regular" friends. I have gained so much from friends all over the country, I figured it would be great to meet some people right here!
Please pray for safe travel/productive appts next week. We are not sure how long we will be in Houston. We are excited to go. We will be meeting some of our new "internet" friends down there. It is always a treat for Buggy to meet other kids like him. They love to compare feeding tubes and play and talk.
Ali
We are so excited to go to Houston next week and hopefully start getting answers to all of our questions. The Dr. we are seeing has gotten INCREDIBLE feedback/reviews from the parents who have seen her. She is very parent/patient friendly and really cares about these kids. Dr's like this seem to be a dying breed, believe me!
Alex has been having a really rough time in therapy the last few weeks. Elizabeth and I have talked about it. We think some of it, is about wanting control, but some of it is just lack of energy. He has no desire to do anything that requires stamina. His frustration level is incredibly high right now. Once again, I think he just doesn't feel great, but we aren't sure why. Elizabeth is great with him. Her and I have the same temperment/philosophy. We both push him to do what he must, but in a loving way. Sometimes you just want to pick him up and hug him though. It is such a struggle for him at times. As a mother, I just want to make things easier sometimes even though I know it isn't in his best interest.
We had an endocrinology appt this morning. He looked at me and said," I'm really confused...I don't know why they sent you here". AHHHH! So he wants to talk to us/possibly see us back after we see the Dr. in Houston. Some of the testing he would normally do is contraindicated in kids with metabolic disorders so he wants Dr. K to decide what should/should not be tested. As always, the office staff loved Alex. Every where we go everyone falls in love with this little guy!
I changed Alex's button for the first time today! Alex did great (and so did Mommy)! I was a little nervous, but it was really easy. His belly looked so funny with just a hole and nothing there. Good thing we aren't squeamish! I made Bruce take pictures. But I won't torture everyone by posting that!
I am working with the pastor of caring and concern at our church to start a support group for parents of children with chronic health care needs. I meet with Leslie tomorrow and then we will put something in the church newsletter. There is definitely something special between Moms whose kids have to go through so much. We go through so many of the same struggles, physically, emotionally, and financially. It is a very different friendship then "regular" friends. I have gained so much from friends all over the country, I figured it would be great to meet some people right here!
Please pray for safe travel/productive appts next week. We are not sure how long we will be in Houston. We are excited to go. We will be meeting some of our new "internet" friends down there. It is always a treat for Buggy to meet other kids like him. They love to compare feeding tubes and play and talk.
Ali
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