Well today Rob finally is going to take care of his Kidney Stones. He keeps getting them but just takes some pain meds a day off from work then deals with the discomfort till it goes away. Well a couple weeks he had a bad attack again and has finally decided to have them blasted. Thank god because there is nothing worse than seeing him in pain and so sick from them. They say it doesn't hurt and he will be up and going shortly after.
Zach is holding his own these days. Taking his medicine like a champ and so far the seizure activity has been kept to a bare minimum and i mean bare minimum. I think since they upped his medicine about 3 weeks ago he has had 2 episodes that I am aware of. Not sure if he has had when not with us. He has not been telling us either again and that worries me. I really want to know so we can have accurate documentation to know how active we all need to really be.
Next week is really busy for us seeing its the week before his big surgery again. He has a cardiologist appointment & eye appointment. On top of his 1st communion meeting, hair cut, and packing for almost 2 weeks.
Marissa has her play this weekend "All Shook Up" I can't wait to see it. They have been working so hard and had a great tech weekend building/painting the set. It went much faster than expected for building it. I will post some pictures once we see the show.
Tuesday, February 8, 2011
Monday, January 24, 2011
..............Neurologist appointment
We went to the Neurologist on Thursday 1/20/11. We spent well over 1 hour in the room with 2 doctors. Zachary had to explain what he was feeling, we as parents had to tell our side, and they reviewed the eeg notes and agreed they believe it is seizures but what type? How often? How long? Those are all the questions. Then of course the question how should we treat this? Well they upped his medicine from 1/2 tsp 2x day to 1 tsp 2x a day. Also his Vit. B6 was upped to 2x a day. B6 is suppose to help with the side affects from the medicine. They also, want to do a 24 hour EEG and said it would be a couple weeks before it got scheduled since we would have to go to Rochester get him hooked up and be there for 24 hours. So I thought kick and asked if it could be coordinated with Boston since in 3 weeks we will be in Boston for his Surgery. They are going to work on that they said because it makes sense. Thank God for some ease on some of the tests/appointments we have to go through.
Well since he has been on the medicine he has had 2 episodes that he has told us about. I think he had 1 the other night when he came back from his grandparents but he says he didn't he was just sad he couldn't get this tractor from the tractor store. So in 1 week only 2 so far. Well its better than the previous weeks without the medicine. I am just scared because once his 24 hr EEG is scheduled he has to be off the medicine for 7 days prior to it. I sure hope that doesn't make for a long week for him. He will be under enough stress at that time.
We are off to the nephrologist on Tuesday for that follow up and lots more questions on why the kidney size difference. Please keep us in your prayers.
Well since he has been on the medicine he has had 2 episodes that he has told us about. I think he had 1 the other night when he came back from his grandparents but he says he didn't he was just sad he couldn't get this tractor from the tractor store. So in 1 week only 2 so far. Well its better than the previous weeks without the medicine. I am just scared because once his 24 hr EEG is scheduled he has to be off the medicine for 7 days prior to it. I sure hope that doesn't make for a long week for him. He will be under enough stress at that time.
We are off to the nephrologist on Tuesday for that follow up and lots more questions on why the kidney size difference. Please keep us in your prayers.
Monday, January 17, 2011
.................Whirlwind again
Our life has been uprooted yet again. Zachary has been having headaches and very concerning. We spent a whole weekend of him having headaches, being very miserable (unlike him), wanting to sleep, and sucking down tylonel/motrin to try to relieve the pain. Well nothing worked and I didn't like his behavior so i took him to the pediatrician. Dr. Anwer listened and seemed concerned. He ordered a EEG to be done, and made a appointment for the cardiologist since Zachs blood pressure had been so high. (When I say high I am talking 140's over 90's).
We went for the EEG and Zachary did awesome considering he had to sit totally still. They did the cap EEG test instead of all the leads attached to his head. If I can manage to get the pictures off my phone to the computer I will post them.
Dr. Anwer called today with results and he said it was very abnormal. He is definitely having seizures and needs to get to the neurologist asap so they will be calling for an appointment. He also said he will need to be medicated for this.
As a parent, I am scared, clueless, upset, and confused. Why? Why us? Why him? I know these are some questions that will never be answered, but in the mean time make it even more difficult for all of us. I will keep everyone posted when I hear more.
We went for the EEG and Zachary did awesome considering he had to sit totally still. They did the cap EEG test instead of all the leads attached to his head. If I can manage to get the pictures off my phone to the computer I will post them.
Dr. Anwer called today with results and he said it was very abnormal. He is definitely having seizures and needs to get to the neurologist asap so they will be calling for an appointment. He also said he will need to be medicated for this.
As a parent, I am scared, clueless, upset, and confused. Why? Why us? Why him? I know these are some questions that will never be answered, but in the mean time make it even more difficult for all of us. I will keep everyone posted when I hear more.
Monday, January 10, 2011
........................Surgery Scheduled
Phew........the Holidays are over and now we can breathe a little. Well for a couple weeks atleast. Zachary is scheduled for surgery on 2/23 to replace the rod in the femur and bone graft. We will be traveling to Boston again for the surgery. We were lucky enough to get into the housing they have at the hospital. If not I really don't know how we would of afforded an almost 2 weeks stay at a hotel in Boston. Thank you God for answering some of my prayers. We will be leaving on the 21st because the 22nd we have a 8 am appointment then a 10 am appointment. Marissa will be staying here at the house with Nonnie Judi. Then at the end of the week Papa Tony, Nonnie Judi & Marissa will come to Boston to see Zachary.
Other upcoming issues is his appointment with the nephrologist for a follow up. I will be calling them before hand because he is having awful headaches and I am really worried. We don't need anything to hold up his surgery. His BP is not getting any better, but the meds he is on for add/adhd are helping out ALOT. He has been able to focus more and is actually taking to reading now. His teacher complimented him on his attentiveness and he was so happy to tell me about it. So I guess it really wasn't just pent up energy from not being able to do as much as he would like to.
Marissa was released from the Dr to go back to all her activities. So we are off and running to play practice 5 days a week, dance 2 days, and softball gym time in between. She is busy, busy, busy. Not to mention my taxi is running FT again now. LOL I am just glad she is doing something so I really can't complain.
The stomache bug his our house over New Years weekend. I had it really bad for 3 days and Marissa had it for 2 days. All the daycare kids/families all had it too so I knew someone in this house would get it, never thought it would be me since I am usually the healthiest. Oh well I guess I needed it for once. (Didn't help me lose any weight though. LOL)
I will keep everyone posted as time gets closer as to whats going on and an address to send him a card if you want to.
Other upcoming issues is his appointment with the nephrologist for a follow up. I will be calling them before hand because he is having awful headaches and I am really worried. We don't need anything to hold up his surgery. His BP is not getting any better, but the meds he is on for add/adhd are helping out ALOT. He has been able to focus more and is actually taking to reading now. His teacher complimented him on his attentiveness and he was so happy to tell me about it. So I guess it really wasn't just pent up energy from not being able to do as much as he would like to.
Marissa was released from the Dr to go back to all her activities. So we are off and running to play practice 5 days a week, dance 2 days, and softball gym time in between. She is busy, busy, busy. Not to mention my taxi is running FT again now. LOL I am just glad she is doing something so I really can't complain.
The stomache bug his our house over New Years weekend. I had it really bad for 3 days and Marissa had it for 2 days. All the daycare kids/families all had it too so I knew someone in this house would get it, never thought it would be me since I am usually the healthiest. Oh well I guess I needed it for once. (Didn't help me lose any weight though. LOL)
I will keep everyone posted as time gets closer as to whats going on and an address to send him a card if you want to.
Thursday, December 30, 2010
..................Boston Appointment & nephrologist
The past few weeks have been awful busy with Dr appointments and the Christmas holiday, so please bare with me as this post is late. Zach had an appointment with the nephrologist on 12/16 and at that appointment he said he doesn't feel he would be a candidate for the Bisphosphonate
Therapy. I am kinda happy about that, because that would mean Zach would have to get a pic line or port for the therapy which would just be even more stress on his self image. The Dr did say his Right Kidney is the size of a 1 yr old, while the Left is quite larger and compensating for the Left. His BP was quite high 146/80 something. We are now monitoring his BP 2x a day to see if it was just anxiety or really that high which could mean more detailed kidney issue. I have bene doing the BP readings and I am getting anywhere between 124-140.
On 12/17 we had an appointment with Dr. Spencer in Boston. She said he will need surgery again because the rod is retracting in the femur and its near the growth plate. He still wasn't healed from his injury in August, but was having some skin break down and a blister on his heal so she took him out of the cast and placed him a brace that you can set a dial for the amount he can bend the knee. Its kinda hard to keep it in place because it just keeps falling down no matter how tight we put the straps. She recommended we try to schedule his surgery around a school break so we are waiting to hear of a date in February since there is winter break then. I know not a way to spend your school vacation, but he keeps missing school for all these appointments so we need to plan accordingly. Dr. Spencer said he would probably be in the hospital 5-7 days again and have a body cast on again. So very similar to his last surgery, except this time just the femur not femur & tibia. While she is in there she will do a bone graft again too.
Then we had Christmas the next week and all the festivities that go along with the wonderful holiday and on Monday 12/27 we went to the peditrician for a follow up on a evaluation from school regarding add/adhd. Dr. Anwer was very patient and sat and actually talked to us about all of this. He agreed with me, this is nothing new with him, but thought maybe he would out grow it or thought some of it was just built up "stuff" from him being so limited and going through so much. Its now affecting his school work so time to be active. No more sitting back and watching and trying to use conservative methods for him. Dr. Anwer prescribed a med for him and its only been 2 days since starting it. It is a slower acting med so it will take 2-3 weeks to get to therapeutic level. I feel awful as a mom having to do this, but we all were getting frustrated at this point and its best for all of us. I will tell you if it makes him a total different child (sedated and what not type) I will stop it immediately because thats not what we are looking to do. We just want to take the edge off for him.
I will keep everyone posted as to when the surgery will actually be. Thanks for all the well wishes we have already received. They help more than you can imagine.
Therapy. I am kinda happy about that, because that would mean Zach would have to get a pic line or port for the therapy which would just be even more stress on his self image. The Dr did say his Right Kidney is the size of a 1 yr old, while the Left is quite larger and compensating for the Left. His BP was quite high 146/80 something. We are now monitoring his BP 2x a day to see if it was just anxiety or really that high which could mean more detailed kidney issue. I have bene doing the BP readings and I am getting anywhere between 124-140.
On 12/17 we had an appointment with Dr. Spencer in Boston. She said he will need surgery again because the rod is retracting in the femur and its near the growth plate. He still wasn't healed from his injury in August, but was having some skin break down and a blister on his heal so she took him out of the cast and placed him a brace that you can set a dial for the amount he can bend the knee. Its kinda hard to keep it in place because it just keeps falling down no matter how tight we put the straps. She recommended we try to schedule his surgery around a school break so we are waiting to hear of a date in February since there is winter break then. I know not a way to spend your school vacation, but he keeps missing school for all these appointments so we need to plan accordingly. Dr. Spencer said he would probably be in the hospital 5-7 days again and have a body cast on again. So very similar to his last surgery, except this time just the femur not femur & tibia. While she is in there she will do a bone graft again too.
Then we had Christmas the next week and all the festivities that go along with the wonderful holiday and on Monday 12/27 we went to the peditrician for a follow up on a evaluation from school regarding add/adhd. Dr. Anwer was very patient and sat and actually talked to us about all of this. He agreed with me, this is nothing new with him, but thought maybe he would out grow it or thought some of it was just built up "stuff" from him being so limited and going through so much. Its now affecting his school work so time to be active. No more sitting back and watching and trying to use conservative methods for him. Dr. Anwer prescribed a med for him and its only been 2 days since starting it. It is a slower acting med so it will take 2-3 weeks to get to therapeutic level. I feel awful as a mom having to do this, but we all were getting frustrated at this point and its best for all of us. I will tell you if it makes him a total different child (sedated and what not type) I will stop it immediately because thats not what we are looking to do. We just want to take the edge off for him.
I will keep everyone posted as to when the surgery will actually be. Thanks for all the well wishes we have already received. They help more than you can imagine.
Monday, December 13, 2010
................Holidays in full swing
I love this time of year just for the baking. Ok I will admit I like Christmas, but I like the original meaning of it not this going crazy and grumpy people in the stores.
We have spent the last couple of weekends baking all sorts of cookies, and doing some shopping on a leisurely stroll. It has been very enjoyable I must say. Usually I run in get what i want and get the heck out of there and get agitated while doing it.
On top of getting ready for the holidays I have been busy running the kids to Dr. appointments again. Its that time already. Wow 4-6 months goes by fast. Marissa is having some problems with her knee she had surgery on so she went last week and they ordered a MRI immediately. Well we go back this week for the results. They did say nothing loose, but her knee cap is a concern. I sure hope she doesn't need surgery again.
Zach had a US of his kidney last week and we go to the nephrologist this week. If I am reading it correctly his left kidney is almost double the size of his right kidney. We will know more on Thursday when we go to the Dr. Then on Friday we are off to Boston again to see Dr. Spencer. Hopefully the cast will be off for good for Zachary. If it comes off it will be 4 months in a cast for the little guy, if not then it will be longer and who knows how much longer.
I am hoping his US machine is helping now that we have had it for about a month. It does take time especially seeing it has to go through a cast so we shall see.
Other than that, thats it on this end. Hope you are all enjoying the holiday season and be safe and Merry.
We have spent the last couple of weekends baking all sorts of cookies, and doing some shopping on a leisurely stroll. It has been very enjoyable I must say. Usually I run in get what i want and get the heck out of there and get agitated while doing it.
On top of getting ready for the holidays I have been busy running the kids to Dr. appointments again. Its that time already. Wow 4-6 months goes by fast. Marissa is having some problems with her knee she had surgery on so she went last week and they ordered a MRI immediately. Well we go back this week for the results. They did say nothing loose, but her knee cap is a concern. I sure hope she doesn't need surgery again.
Zach had a US of his kidney last week and we go to the nephrologist this week. If I am reading it correctly his left kidney is almost double the size of his right kidney. We will know more on Thursday when we go to the Dr. Then on Friday we are off to Boston again to see Dr. Spencer. Hopefully the cast will be off for good for Zachary. If it comes off it will be 4 months in a cast for the little guy, if not then it will be longer and who knows how much longer.
I am hoping his US machine is helping now that we have had it for about a month. It does take time especially seeing it has to go through a cast so we shall see.
Other than that, thats it on this end. Hope you are all enjoying the holiday season and be safe and Merry.
Tuesday, November 16, 2010
.................Ultra sound therapy
Ok so yes I am that mom that follows the news and then asks the Dr about what was on it. Well it just happened to be the week before Zachs last appointment I caught part of a story on the news about ultrasound therapy and how it helps the bones heal faster, so you know me I go in the Dr office and ask about this. Well the dr said yes its helping people, but it may not be a good thing for Zach. I was like what? Why? This isn't fair! Well after explaining to me that what it does is kinda fuses the bone together and stimulates bone healing and new bone growth if a bone graft was done. So with that in mind thats a great thing because thats what we want right? Well yes and no because Zach is only 7 and hasn't hit his growth spurt yet for his teen years they are worried about it affecting his growth plate. But on the other hand his Dr said he already has a leg that is shorter than the other by more than 1 1/2 inches (almost 2 now) so that shows his leg isn't really growing with the other leg, so trying ultrasound therapy would be worth a shot. We can't really stunt the growth plate anymore than it already is so we are going to give it a shot. I am hoping and praying this might help him some and maybe make the bone stronger since he already had the bone graft done almost 2 years ago.
So with all that said today his ultrasound machine thing-a-ma-gig will be delivered. I was shocked when I heard the cost of the darn thing. Sit down (who am I kidding you probably are since your reading this on the computer) $5,000.00. I am in the wrong market I need to invent 1 of these darn things. Thank god for insurance (and I guess my insurance isn't all to bad now that we switched) because they participate with BCBS so they can only charge $3,000.00 and our policy covers 50% so that brings it to $1,500.00 for us to come up with. I was like oh I don't know if we can swing it then especially seeing its more experimental at this point for him. If it was a definite it would help him and he absolutely needs it then I wouldn't hesitate on struggling even more to pay for it. But god was looking over me at this moment of time. The lady on the other end asked if monthly payments would help and I was like not really we have a ton of medical bills right now and I can't swing anymore, so she said they do have a program she can see if he would qualify for and if so it would pick up the cost for us. She was really helpful and guess what??????? We qualified (with her help)!!!!!!!!!!!!! I was so thankful to her I was literally in tears on the phone. I can't believe someone out there was willing to help us out for once instead of making us try to jump all the hoops to get through. So thank you to her and God for looking over us today. I can't wait to see this and if it really works for my little guy.
I will post pics later as to what it looks like and how it actually works once the guy delivers it and applies it.
So with all that said today his ultrasound machine thing-a-ma-gig will be delivered. I was shocked when I heard the cost of the darn thing. Sit down (who am I kidding you probably are since your reading this on the computer) $5,000.00. I am in the wrong market I need to invent 1 of these darn things. Thank god for insurance (and I guess my insurance isn't all to bad now that we switched) because they participate with BCBS so they can only charge $3,000.00 and our policy covers 50% so that brings it to $1,500.00 for us to come up with. I was like oh I don't know if we can swing it then especially seeing its more experimental at this point for him. If it was a definite it would help him and he absolutely needs it then I wouldn't hesitate on struggling even more to pay for it. But god was looking over me at this moment of time. The lady on the other end asked if monthly payments would help and I was like not really we have a ton of medical bills right now and I can't swing anymore, so she said they do have a program she can see if he would qualify for and if so it would pick up the cost for us. She was really helpful and guess what??????? We qualified (with her help)!!!!!!!!!!!!! I was so thankful to her I was literally in tears on the phone. I can't believe someone out there was willing to help us out for once instead of making us try to jump all the hoops to get through. So thank you to her and God for looking over us today. I can't wait to see this and if it really works for my little guy.
I will post pics later as to what it looks like and how it actually works once the guy delivers it and applies it.
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