Hello guys,
Well our luck ran out today. As nervous as Mike and I were about the “inner findings” of Trey we were most afraid of what we would hear today when the orthopedic doctor looked at his neck and spine.
Fist let me add to yesterday’s saga…Trey made it through the night with out a peep but…it took him half of the day to pee and when he could physically no longer hold it…it must have “burned” because the look of agony on his face made him afraid to go the rest of the day…he’s “all good” now but I was a bit afraid that we were going to regress in potty training because he would become afraid to us the toilet, have an upset stomach for who knows how long, and maybe even have to deal with a UTI (yes, boys get those too). Like always, Trey came through and preformed with flying colors and just in time to send his urine to the lab for today’s fed ex pickup.
Also, not once today did we hear Trey complain about being sore or even mad about the huge bandages still taped on three different places on his little body. I thought for sure when we drove up to the hospital, for the fourth time that he would “freak out” at the sight of it because of what he endured yesterday but, nope, NOTHING! He walked along as happy as could be and turned heads with every corner we turned, every elevator we rode and every floor we visited. We hear how adorable he is where ever he goes, he brings happiness to so many people that he encounters Y I wish I would have taken pictures with all the co-eds that came up to Trey this week to say hi to him and tell us how cute he is…it would have made him smile one day
Our first appointment with Dr. Shapiro (Neuro psych) was very positive. Trey is mentally “normal” as we suspected and scored above normal as far as his memory is concerned which impressed Dr. Shapiro immensely (I was waiting to hear that from her ~ any bit of good news keeps me going). Treys results regarding his brain function along will the blood and urine results are a good indicator as to which MPS disorder Trey may have. Nothing is “straight forward” as we are finding out and there are extreme ranges of each of the MPS disorders but having normal cognitive skills help them eliminate which enzymes he may be lacking. Dr. Shapiro would like us to remain very aware of Trey’s learning abilities as they could regress should he have an MPS disorder, including MSD that “usually” affects the brain.
Next was, Dr. Polgreen (endocrinology). She had ordered more blood to be drawn from Trey today to test his level of growth hormone to see how active it is in his body. We should be getting a call from her in about a week to let us know the results of this blood draw. If the initial test show that Trey’s body is not producing GH, than a four hour test would be advised. In this test, over a four hour period they would introduce adrenaline to his body to see how much GH he produces in the pituitary gland. We had decided that the next time we follow up with Dr. Whitley here in MN we would also be sure to meet with Dr. Polgreen.
And finally, on to Dr. Schwender with the Twin Cities Spine Center . I just knew that Trey’s kyphosis (curvature of his lower back) had progressed for the worse but to what degree I wasn’t sure. I had been praying that I was just being too “clinical” with him at that maybe it wasn’t as bad as it looked to me. I was right, it was bad and according to the doctor very bad. Trey’s curve went from a 20 degree curvature in July, 2007 to a 62 degree curvature today. I was so heartbroken to see the life size x-ray’s of his little torso all lit up and hanging in the room…the images of my babies deformity was as big as life. We were told to repeat the x-rays in 4 months and if the curve becomes greater than 70 degrees, surgery is recommended. Mike had felt that after this spine appointment what ever wind was left in his sails of hope was let out. Of course Trey had no idea what we were being told and the surgeries that he may have to endure but to keep the pain on our faces from him was excruciating…he is very aware of my expressions and kept staring at me, thank God he never asked why I was so sad.
After this news, Dr. Schwender wanted to take more x-rays of Trey’s spine only this time of his atlas and axis (C1 and C2 vertebra) with Trey looking up and looking down. The doctor was looking for range of motion in these two vertebra. The C1 and C2 are not supposed to move around. We have been told so much troubling news about this area of Trey’s spine in the last two months that all we could do was hold our breath at the result of these findings. To our surprise, the x-rays showed a slight amount of motion but nothing to act upon at this time, only to keep close watch of.
Dr. Schwender took full spin x-ray’s which also showed him Trey’s hip’s. He told us that eventually (as soon as 5 years old) Trey would have to have hip surgery to ease the hip dysplasia that was evident in these full body x-rays. This too we will keep a close eye on and will be looked at in the full spine x-rays that we will have taken again in March of ‘09.
Tomorrow we have one final meeting while we are here and that will be to wrap up this week with Dr. Whitley. From there we are on our way up North to see our two big guys and spend a day with our family before we head home on Sunday.
I don’t know what to say or feel, all I do know is that every doctor we met this week told us to keep doing what we are doing and to let Trey be a normal, active little boy~we shall follow the doctors orders
Humbled by your love and support,
Mike, Cami, Drake, Broc and Trey
Friday, November 21, 2008
Thursday, November 20, 2008
Day 3 in MN {he is my HERO!}
Once again all of our prayers have been answered and are working Trey did an amazing job today, he is my HERO!
We arrived at 9:15am and left at 7:30pm…such a long, long day for such a little guy. Because of the surgeries planned for today, Trey wasn’t able to eat anything after 4am or drink anything after 9:40 am, I was so worried that he would start crying for food or water. We waited in the pre-op area until 1:15pm and he only asked twice for water but left it at, “no” and was the perfect patient. I was so thankful for his sweet disposition because many other children would have been throwing a fit by now.
I was able to “suit up” and be with him as he was put under anesthesia …again he was so calm and sweet. He was very inquisitive as to what all the people were up to but never expressed fear, only a bit of discomfort as the mask was held over his face. I kissed him, said a prayer in his ear and left with a peaceful feeling knowing he was in great hands and having a “good feeling” about why we were doing what we were to our precious baby.
At 3:20 pm we were told that Trey’s spinal tap was complete and that he didn’t have pressure on his brain meaning he did not have a hydro cell…Thank you God! The amount of relief we felt was indescribable…our prayers answered and another item checked off our list. Dr. Whitley spent so much time with us before the surgeries and explained that other than results from the spinal tap and the MRI of the head/brain and neck (which we will receive tomorrow) all other tests and results would bring us answers within the next month.
At 5:30 pm we were walked back to the recovery room by Dr. Whitley, to Trey who was lying in bed so lovable and still a bit non respondent. Little bandages were stuck all over his body from the incisions made from the surgeries that he underwent today. He was not happy with the fact that the catheter was still in place as he was coming to, do you blame him? I saw Mike’s face cringe as they pulled it out, he couldn’t even watch. Trey was given a cherry Popsicle before we arrived and had done very well with “keeping it down”. After he was put in my arms (which at that time I melted and was filled with intense love for my youngest child), he immediately asked for cookies (remember he hadn’t eaten one thing all day). He polished off a bag of chocolate chip and nutter butter cookies as well as some batman fruit snacks. As soon as we were discharged he wanted to “cash in” on the promise we had made to him before his “nap” that we would go for ice cream…I didn’t think #1 he would remember or #2 he’d still be hungry for it. He had an Oreo cookie shake as well as helping me with my waffle cone…too funny! But wait it’s not over, when we got to the hotel room he ate two cups of vanilla pudding…I will hold my breath to see how well he makes it through the night.
Right before he fell a sleep he needed to go to the bath room but just as we were told because of the catheter, it would burn. He said it hurt to pee and didn’t go a drop. I was so sad for him and worried that he would be afraid to try again. Right now he’s sleeping like an angel and I just thank God for the success we had today and the test’s that were completed. We just know that these long days are all well spent and will bring us so many answers, the answers we have been looking for for months now.
Did I tell you all how amazing Dr. Whitley is? He is so not doing this for the paycheck, he genuinely cares about Trey and our family, as his actions prove it daily.
Tomorrow morning Trey will again give a urine sample as well as blood to send off to two more lab’s for testing. At 9am we will meet with a leading authority, neuro psychologist in the field of MPS related disorders for a feedback session from Trey’s Monday testing. At 10am Dr. Whitley pulled some strings to allow us to be able to meet with another “big wig” in the field, this time related to growth troubles in MPS patients. And finally at 1pm we will meet with the spine center to fully evaluate Trey’s kyphosis (most likely having x-rays taken at this time of his spine).
We called Drake and Broc at their Great Grandma’s tonight, they too had just come home from getting some ice cream. Both of the boys sounded so happy. We didn’t go into detail about Trey’s day but let each of them talk to him as they both sounded concerned and wanted to say hi. Trey was as happy as could be to hear his brother’s voices on the other end of my cell phone and refused to give it back to me when I asked-haha. We are very blessed to be able to have family here to watch them as we are going through all of this at the University but in the same breath miss them after a day at the hospital is threw!
Mike and I are so thankful for the doctors here and their expertise in the field of MPS disorders along with the Willis family for strongly (almost insisting) that we go see Dr. Whitley here in Minnesota ! It’s so amazing how all the events that happened in the order that they did to bring us to this place in our journey We feel so much stronger not feeling the uncertainty we have since Trey’s diagnosis, knowing that Trey’s care is now in the hands of some of the best in the field. Also having these doctors have a face with the name and the condition, puts my heart at ease that no matter what comes our way, together, with these doctors, we can handle the next step.
With hugs,
The Lanes~Mike, Cami, Drake, Broc and Trey
We arrived at 9:15am and left at 7:30pm…such a long, long day for such a little guy. Because of the surgeries planned for today, Trey wasn’t able to eat anything after 4am or drink anything after 9:40 am, I was so worried that he would start crying for food or water. We waited in the pre-op area until 1:15pm and he only asked twice for water but left it at, “no” and was the perfect patient. I was so thankful for his sweet disposition because many other children would have been throwing a fit by now.
I was able to “suit up” and be with him as he was put under anesthesia …again he was so calm and sweet. He was very inquisitive as to what all the people were up to but never expressed fear, only a bit of discomfort as the mask was held over his face. I kissed him, said a prayer in his ear and left with a peaceful feeling knowing he was in great hands and having a “good feeling” about why we were doing what we were to our precious baby.
At 3:20 pm we were told that Trey’s spinal tap was complete and that he didn’t have pressure on his brain meaning he did not have a hydro cell…Thank you God! The amount of relief we felt was indescribable…our prayers answered and another item checked off our list. Dr. Whitley spent so much time with us before the surgeries and explained that other than results from the spinal tap and the MRI of the head/brain and neck (which we will receive tomorrow) all other tests and results would bring us answers within the next month.
At 5:30 pm we were walked back to the recovery room by Dr. Whitley, to Trey who was lying in bed so lovable and still a bit non respondent. Little bandages were stuck all over his body from the incisions made from the surgeries that he underwent today. He was not happy with the fact that the catheter was still in place as he was coming to, do you blame him? I saw Mike’s face cringe as they pulled it out, he couldn’t even watch. Trey was given a cherry Popsicle before we arrived and had done very well with “keeping it down”. After he was put in my arms (which at that time I melted and was filled with intense love for my youngest child), he immediately asked for cookies (remember he hadn’t eaten one thing all day). He polished off a bag of chocolate chip and nutter butter cookies as well as some batman fruit snacks. As soon as we were discharged he wanted to “cash in” on the promise we had made to him before his “nap” that we would go for ice cream…I didn’t think #1 he would remember or #2 he’d still be hungry for it. He had an Oreo cookie shake as well as helping me with my waffle cone…too funny! But wait it’s not over, when we got to the hotel room he ate two cups of vanilla pudding…I will hold my breath to see how well he makes it through the night.
Right before he fell a sleep he needed to go to the bath room but just as we were told because of the catheter, it would burn. He said it hurt to pee and didn’t go a drop. I was so sad for him and worried that he would be afraid to try again. Right now he’s sleeping like an angel and I just thank God for the success we had today and the test’s that were completed. We just know that these long days are all well spent and will bring us so many answers, the answers we have been looking for for months now.
Did I tell you all how amazing Dr. Whitley is? He is so not doing this for the paycheck, he genuinely cares about Trey and our family, as his actions prove it daily.
Tomorrow morning Trey will again give a urine sample as well as blood to send off to two more lab’s for testing. At 9am we will meet with a leading authority, neuro psychologist in the field of MPS related disorders for a feedback session from Trey’s Monday testing. At 10am Dr. Whitley pulled some strings to allow us to be able to meet with another “big wig” in the field, this time related to growth troubles in MPS patients. And finally at 1pm we will meet with the spine center to fully evaluate Trey’s kyphosis (most likely having x-rays taken at this time of his spine).
We called Drake and Broc at their Great Grandma’s tonight, they too had just come home from getting some ice cream. Both of the boys sounded so happy. We didn’t go into detail about Trey’s day but let each of them talk to him as they both sounded concerned and wanted to say hi. Trey was as happy as could be to hear his brother’s voices on the other end of my cell phone and refused to give it back to me when I asked-haha. We are very blessed to be able to have family here to watch them as we are going through all of this at the University but in the same breath miss them after a day at the hospital is threw!
Mike and I are so thankful for the doctors here and their expertise in the field of MPS disorders along with the Willis family for strongly (almost insisting) that we go see Dr. Whitley here in Minnesota ! It’s so amazing how all the events that happened in the order that they did to bring us to this place in our journey We feel so much stronger not feeling the uncertainty we have since Trey’s diagnosis, knowing that Trey’s care is now in the hands of some of the best in the field. Also having these doctors have a face with the name and the condition, puts my heart at ease that no matter what comes our way, together, with these doctors, we can handle the next step.
With hugs,
The Lanes~Mike, Cami, Drake, Broc and Trey
Wednesday, November 19, 2008
Now on to Day 2 in MN
Hi guys,
Some thing’s to add to last night’s update (now that I’ve gotten a bit of rest).
Forgot to tell you that Mike had asked Dr. Whitley what he thought when he first say Trey, letting him know that we are “holding onto strings”. Dr. Whitley said (quote) that he was very excited when he first saw Trey in the hall and that he looked like a healthy, happy little boy. My first thought was, this is great news (treat the patient not the symptoms). Mike felt like he had been drowning is a sea of despair and that Dr. Whitley just threw him a life jacket (something to hold to).
The neuro physiologist we are about to meet is the leading expert in MPS related disorders and how they affect the brain. Again, we are in good hands. To add to this and to confirm it again today, we feel so much more “normal” here. People have actually heard of MPS VI, we don’t have to explain from the beginning to every different specialist we see about Trey and his disorder. Not only do they know about MPS conditions, they are leading experts in the field. We are definitely in the right place
Dr. Whitley has only seen 3 MSD patients; Trey would only be his 4th. This doctor is however, extremely well versed on this and every other MPS disorder. He knows precisely how to describe each of them and the scientific details of each.
To add to Drake’s “queasiness” from giving blood yesterday, he wasn’t sure and thought that he may have to give more due to the fact that the phlebotomist that drew his blood used a different colored vial than the rest of ours. It was for one of the tests they are performing on all four of us. He was so worried that he may have to get re-pricked to fill the correct colored vial. Luckily for all of us, everything was going to work out fine. Dr. Whitley stayed downstairs with us during this procedure and was able to confirm that this would be okay because it was him, personally that would be running the test from that particular vial.
We felt like we were give the royal treatment all day yesterday having “the man” himself walk us around and introduce our family to all involved with Trey’s health. Every single person was gracious to meet us and gave us a warm welcome (all commented on how nice the weather was where we were from –haha).
After a long day for all of us, we decided to treat the boys to a few hours at the Mall of America ~ particularly, Nickelodeon Universe. Because we had arrived so late, it was “happy hours” there. We were able to purchase wrist bands for unlimited rides at a fraction of the price. We practically felt like we were the only ones there = no waiting in lines! All three of the boys had a great time and justifiably deserved it. Did I tell you in yesterday’s email that during our long meeting with Dr. Whitley Drake and Broc entertained themselves in the room next door and were absolutely perfect, while Trey took a cat nap in the room with Mike and I? We didn’t hear a peep out of any them the entire time! They really did “earn” Nick Universe They can’t wait to tell everyone the big, scary rides they went on all by themselves and that I was way too afraid to put one foot on.
Now on to Day 2 in MN
Mike, Drake and Broc drove Trey and I to the hospital for Treys infusion this morning. Trey and I had already reached our room, looked out the window and right below our window was Mike and I boys getting into the car. Trey knocked on the window from above, Drake heard us and they all waived at each other for the longest time. It was so cute how much the Drake and Broc care for Trey and how much Trey loves his big brothers. After the long and sweet goodbye, Mike drove the boys to the city of Hinkley where they met Auntie. Hinkley is half way to Granny’s house where the boys will stay until we pick them up after the week’s appointment’s are over. They all had breakfast together (Aunties’ Mike was with her too) then Mike turned around to drive back another 2 hours to the University to pick up Trey and I from the infusion.
About the infusion, the room was an actual room with a door, a restroom and even a shower – just like a recovery room after labor. The privacy was immeasurable! Dr. Whitley wanted to give Trey his infusion without any of his premeds (Tylenol and Benadryl). I can’t tell you how happy I was to hear this. You all know I am the type of mom that doesn’t first reach for the medicine bottle when the boys are sick. I hated to give the baby these medications week after week and worried so much about the long term side effects they would have on his liver. Trey was again the “perfect patient” and didn’t have a single adverse reaction ie; elevated temperature, rash, sweats. I hope we can relay this to the AZ doctors and make this part of his orders at St. Joes (IF we are even to continue the Naglazyme infusion’s). The nurses didn’t hook Trey up to any monitors they only took his vitals through out the infusion and visually checked him for any possible adverse reactions. In Arizona Mike and I worry every single time Trey’s “pulse sock” alarm’s. Most of the time the monitor goes off it’s nothing to worry about but it’s just the thought of the “what if” every time. I didn’t feel that once today. My “at ease” feelings obviously transcended to Trey too – even with out the Benadryl, he slept like a baby for more than two hours during today’s infusion. The nurses also showed us to the “kitchen” where we were able to help ourselves to drinks, crackers and toast. We always feel so uncomfortable asking the nurses at St. Joes to get us water, that this in it self was a very nice amenity, as random as it sounds.
Trey was a big boy and gave a nice adequate urine sample first thing this morning, before his infusion then gave quite a bit of blood to run a series of tests on after his infusion. We gave him lots of orange juice just in case but of course, “true to Trey”…he was just fine.
After the babies infusion with perfect timing Mike arrived in our room. I was so happy he got to visually inspect the differences and meet the nice nursing staff. We love our nursing staff in Az but the expertise, familiarity with MPS and the amenities here are incomparable. Mike said is was like going from the NCAA to the NFL J The ladies kept talking about yesterdays visit and their meeting with our three boys and how cute they were. Trey was able to pick from a huge box of toys as we left for the day.
The rest of the day we walked around the campus then drove back to the hotel to have a nice relaxing night. Having dinner without Drake and Broc felt so incomplete~ I miss them already
Dr. Whitely called into Trey’s infusion room to talk over tomorrow’s schedule with me. As usual, he went over every procedure in detail, why he felt each was necessary, gave me the option of not having any one of them done, explained the risks of each and followed up with reiterating the expertise of all doctors involved in Trey’s care tomorrow. He gave me as long as it took and again asked that I call if I had any additional questions or if Mike wanted to go over any of this with him, since he wasn’t there. I am so impressed with this man’s professionalism and bed side manners and do I have to even say his knowledge in this field?!
Please keep our precious little man in your prayers tomorrow as he has a big day planned.
So here is tomorrow’s schedule;
Give urine first thing tomorrow morning, put on ice and bring to appointment
Arrive at main hospital at 10am
First they will put Trey under general anesthesia with a breathing tube down his throat into his lungs. Trey will be completely out and on a ventilator for about 3 hours.
Trey will have a Fibroblast (deep layers of skin - 1/8” diameter hole taken from his shoulder). Because they dig so deep, this will take about a week to heal.
Next a liver biopsy. Yes, he had one of these done at about 20 days old. We will get the results of Trey’s original liver biopsy from Dr. Notrika sent to Dr. Whitley to use to compare differences.
Then a MRI which will take pictures of Trey’s 1). head (brain), 2). neck to see if the structures around his spinal cord are compressing the neck 3). Abdomen to calculate the volume of the liver and spleen
And Finally a Spinal tap to measure the pressure in Trey’s brain. Dr. Whitley will perform this procedure. He will take a 1 ½” long needle in the center of Trey’s back between two bone’s and into the sack of fluid that encases the spinal cord to take a specimen of the fluid (a CSF) What Dr. Whitley is checking that Trey does not have a hydro cell. Finding a hydro cell would be very scary news .
We are so concerned about holding strong through the results of these tests but know we are in the best of best hands, trust these doctors and realize that this is the reason we are here… to get answers.
Love,,
Cami
p.s. the pictures will come when we return home and I can down load them to our computer…you know me I’ve take tons
Some thing’s to add to last night’s update (now that I’ve gotten a bit of rest).
Forgot to tell you that Mike had asked Dr. Whitley what he thought when he first say Trey, letting him know that we are “holding onto strings”. Dr. Whitley said (quote) that he was very excited when he first saw Trey in the hall and that he looked like a healthy, happy little boy. My first thought was, this is great news (treat the patient not the symptoms). Mike felt like he had been drowning is a sea of despair and that Dr. Whitley just threw him a life jacket (something to hold to).
The neuro physiologist we are about to meet is the leading expert in MPS related disorders and how they affect the brain. Again, we are in good hands. To add to this and to confirm it again today, we feel so much more “normal” here. People have actually heard of MPS VI, we don’t have to explain from the beginning to every different specialist we see about Trey and his disorder. Not only do they know about MPS conditions, they are leading experts in the field. We are definitely in the right place
Dr. Whitley has only seen 3 MSD patients; Trey would only be his 4th. This doctor is however, extremely well versed on this and every other MPS disorder. He knows precisely how to describe each of them and the scientific details of each.
To add to Drake’s “queasiness” from giving blood yesterday, he wasn’t sure and thought that he may have to give more due to the fact that the phlebotomist that drew his blood used a different colored vial than the rest of ours. It was for one of the tests they are performing on all four of us. He was so worried that he may have to get re-pricked to fill the correct colored vial. Luckily for all of us, everything was going to work out fine. Dr. Whitley stayed downstairs with us during this procedure and was able to confirm that this would be okay because it was him, personally that would be running the test from that particular vial.
We felt like we were give the royal treatment all day yesterday having “the man” himself walk us around and introduce our family to all involved with Trey’s health. Every single person was gracious to meet us and gave us a warm welcome (all commented on how nice the weather was where we were from –haha).
After a long day for all of us, we decided to treat the boys to a few hours at the Mall of America ~ particularly, Nickelodeon Universe. Because we had arrived so late, it was “happy hours” there. We were able to purchase wrist bands for unlimited rides at a fraction of the price. We practically felt like we were the only ones there = no waiting in lines! All three of the boys had a great time and justifiably deserved it. Did I tell you in yesterday’s email that during our long meeting with Dr. Whitley Drake and Broc entertained themselves in the room next door and were absolutely perfect, while Trey took a cat nap in the room with Mike and I? We didn’t hear a peep out of any them the entire time! They really did “earn” Nick Universe They can’t wait to tell everyone the big, scary rides they went on all by themselves and that I was way too afraid to put one foot on.
Now on to Day 2 in MN
Mike, Drake and Broc drove Trey and I to the hospital for Treys infusion this morning. Trey and I had already reached our room, looked out the window and right below our window was Mike and I boys getting into the car. Trey knocked on the window from above, Drake heard us and they all waived at each other for the longest time. It was so cute how much the Drake and Broc care for Trey and how much Trey loves his big brothers. After the long and sweet goodbye, Mike drove the boys to the city of Hinkley where they met Auntie. Hinkley is half way to Granny’s house where the boys will stay until we pick them up after the week’s appointment’s are over. They all had breakfast together (Aunties’ Mike was with her too) then Mike turned around to drive back another 2 hours to the University to pick up Trey and I from the infusion.
About the infusion, the room was an actual room with a door, a restroom and even a shower – just like a recovery room after labor. The privacy was immeasurable! Dr. Whitley wanted to give Trey his infusion without any of his premeds (Tylenol and Benadryl). I can’t tell you how happy I was to hear this. You all know I am the type of mom that doesn’t first reach for the medicine bottle when the boys are sick. I hated to give the baby these medications week after week and worried so much about the long term side effects they would have on his liver. Trey was again the “perfect patient” and didn’t have a single adverse reaction ie; elevated temperature, rash, sweats. I hope we can relay this to the AZ doctors and make this part of his orders at St. Joes (IF we are even to continue the Naglazyme infusion’s). The nurses didn’t hook Trey up to any monitors they only took his vitals through out the infusion and visually checked him for any possible adverse reactions. In Arizona Mike and I worry every single time Trey’s “pulse sock” alarm’s. Most of the time the monitor goes off it’s nothing to worry about but it’s just the thought of the “what if” every time. I didn’t feel that once today. My “at ease” feelings obviously transcended to Trey too – even with out the Benadryl, he slept like a baby for more than two hours during today’s infusion. The nurses also showed us to the “kitchen” where we were able to help ourselves to drinks, crackers and toast. We always feel so uncomfortable asking the nurses at St. Joes to get us water, that this in it self was a very nice amenity, as random as it sounds.
Trey was a big boy and gave a nice adequate urine sample first thing this morning, before his infusion then gave quite a bit of blood to run a series of tests on after his infusion. We gave him lots of orange juice just in case but of course, “true to Trey”…he was just fine.
After the babies infusion with perfect timing Mike arrived in our room. I was so happy he got to visually inspect the differences and meet the nice nursing staff. We love our nursing staff in Az but the expertise, familiarity with MPS and the amenities here are incomparable. Mike said is was like going from the NCAA to the NFL J The ladies kept talking about yesterdays visit and their meeting with our three boys and how cute they were. Trey was able to pick from a huge box of toys as we left for the day.
The rest of the day we walked around the campus then drove back to the hotel to have a nice relaxing night. Having dinner without Drake and Broc felt so incomplete~ I miss them already
Dr. Whitely called into Trey’s infusion room to talk over tomorrow’s schedule with me. As usual, he went over every procedure in detail, why he felt each was necessary, gave me the option of not having any one of them done, explained the risks of each and followed up with reiterating the expertise of all doctors involved in Trey’s care tomorrow. He gave me as long as it took and again asked that I call if I had any additional questions or if Mike wanted to go over any of this with him, since he wasn’t there. I am so impressed with this man’s professionalism and bed side manners and do I have to even say his knowledge in this field?!
Please keep our precious little man in your prayers tomorrow as he has a big day planned.
So here is tomorrow’s schedule;
Give urine first thing tomorrow morning, put on ice and bring to appointment
Arrive at main hospital at 10am
First they will put Trey under general anesthesia with a breathing tube down his throat into his lungs. Trey will be completely out and on a ventilator for about 3 hours.
Trey will have a Fibroblast (deep layers of skin - 1/8” diameter hole taken from his shoulder). Because they dig so deep, this will take about a week to heal.
Next a liver biopsy. Yes, he had one of these done at about 20 days old. We will get the results of Trey’s original liver biopsy from Dr. Notrika sent to Dr. Whitley to use to compare differences.
Then a MRI which will take pictures of Trey’s 1). head (brain), 2). neck to see if the structures around his spinal cord are compressing the neck 3). Abdomen to calculate the volume of the liver and spleen
And Finally a Spinal tap to measure the pressure in Trey’s brain. Dr. Whitley will perform this procedure. He will take a 1 ½” long needle in the center of Trey’s back between two bone’s and into the sack of fluid that encases the spinal cord to take a specimen of the fluid (a CSF) What Dr. Whitley is checking that Trey does not have a hydro cell. Finding a hydro cell would be very scary news .
We are so concerned about holding strong through the results of these tests but know we are in the best of best hands, trust these doctors and realize that this is the reason we are here… to get answers.
Love,,
Cami
p.s. the pictures will come when we return home and I can down load them to our computer…you know me I’ve take tons
DAY 1 MN
AMAZING…that’s the one word that comes to mind when I think of Dr. Whitley! I’m so extremely tired but I want to write to ya’ll before I forget the details of today (or at least an outline…I might be better at remembering the details when I’m not so tired).
Our first appointment was at 9am. It was a neuro-psych meeting that started out with a lot of questions that began with “in the beginning…”so, describe your pregnancy”… on to a million question’s about Trey specifically. From there they took Trey and I in a separate room for at least 1 ½ hours. They tested him with stacking solid colored blocks then on to puzzles (starting with two pieces and adding up to four) but they turned them face down and not necessarily facing the correct way, then on to blocks that had different patterns on them in which Trey had to copy the pattern the doctor made with her set of blocks. They asked him questions like, “what color is the grass?”, what do you cut paper with?”, after that they showed him pictures and asked him the names of each, then showed him a set of four pictures and asked him, “which one do you eat?” For example, with only one being a hamburger and the rest being other objects. And finally they had wooden boxes with a different color felt glued to the front of each of them with tops that open. Every one had an object in them except the white one. The doctor started with two (one with an object and the empty white one). She took the object (horse) out of the red box, showed it to Trey than mixed around the white and red boxes, gave Trey the horse and asked him “where does it go?” She was not allowed to say the name of the object or the color on the front of the box. She then added all the way up to ten different colored boxes because Trey kept getting them right. She said that this test was just invented (by a doctor here in MN) and had only been used 9 times (Trey being the 10th) and that no child had got past four boxes but Trey’ memory scored him 100% on all ten J Mike and I had told her in the beginning when asked a lot of questions about Trey specifically that he had a great memory but wasn’t very verbal. I can’t wait until Thursday to meet with the doctor (she will be in our Thurs. feedback meeting) that invented this new memory test to see her reaction to Treys’ mastering her new test! He didn’t do well on the direct questions of “what color is grass?” but did great on everything else...we told you so. I wanted so very badly to help him but practically had to sit with tape over my mouth during every test – you all know how hard that was for me – haha!
From the Neuro-psych testing we went to have lunch. We stayed on campus and ate at the “Big 10” restaurant which was about two blocks away. It was snowing and we were freezing (except Mike and Broc, they loved it!!!).
We rushed back and meet with Dr. Whitley. He was such a gentle man who was so thorough and patient with all of our questions. He gave us two possibilities, leaning towards one much more than the other. One being MPS VI (let’s figure out why he’s not responding) or the other (which he believes is our case) is again the MSD. MSD (multiple sulfatase deficiency) is a disorder in itself that would mean that Trey could be deficient in up to 15 different enzymes. One of the enzymes is in fact the same that is missing in MPS VI which is why at first look they figured this is his diagnoses (and had no reason to look beyond this) but since he isn’t responding to the MPS VI treatment, we needed to pursue this further. Even though “text book” states that he would be deficient in 15 different enzymes, it doesn’t necessarily mean he is. Normally a patient with MSD would have a lot of “white matter’ in the brain and not function as well as Trey. The scary part is that he could regress at 10 or 12 or even 16 year old (no patient is the same) and although he may not mentally decline, he would loose control of his limbs (muscle control). *Please remember how tired I am, in case I’m not making myself clear~ at least I had this much, plus Mike can help explain it further (he, as well as all the boys are sleeping right now). Dr. Whitley wrote on the chalk board lot’s of scientific stuff (molecules, charts, etc.) but took his time to make sure we understood. Mike asked a lot a great questions and he can expand on this meeting. I cried a lot and am so scared but will save the heartache for the actual diagnosis (which by the way won’t come for three to four weeks later). The boys were in the room next to us playing their Nintendo ds and watching a movie…they were so good! Again, there’s so much more but we’ll leave it at this for now.
From there, Trey had a EKG and an Echocardiogram and was meet by the doctor who read these tests. She said that Trey’s heart was absolutely PERFECT!!! She said that the majority of the people she see’s doesn’t have this positive of test results. Dr. Whitley waited for us and said that this was great news. He also said that most MPS VI patients have some sort of heart problems (maybe another reason he’s leaning towards MSD).
Dr. Whitley then walked and waited with us down stairs to have Drake, Broc, Mike and I give blood for both bone marrow match and carrier testing. Drake lost his color in his cheeks and seemed a bit nauseous (remind me to expand on this). Broc and Mike did great (and me too). Broc wanted to know if the lady who took his blood was a vampire? Trey watched us all and was so inquisitive as to what we were doing. He was very adamant about his brothers getting a band aid for their boo-boo’s. This baby is so compassionate towards others!
Dr. Whitley then walked us over to another building to show us where Trey’s infusion would be tomorrow, introduced us to the head nurse and to the pharmacist…can you guys believe this VIP treatment? Drake was given some OJ and crackers (and Broc and Trey too – for being equal) since he still wasn’t feeling so great (poor baby…I truly didn’t think he would react this way). I have to say that even more than the boys seeing Trey’s infusion at St. Joes, being picked themselves along with me talking to them about Trey going through this sort of thing every week of his life made them so much more “in touch” with what their baby brother goes through…I think they will be more “understanding” from here on out.
And finally Dr. Whitely walked us to the parking garage tunnel and made sure we understood how to get from there to the infusion tomorrow. He shook the boys hands as well as Mike and I’s and told us he would see us tomorrow at Trey’s infusion (really, they do this???) Oh yeah, he then gave us a number to reach him at in case of an emergency…CRAZY, we know! We are so impressed with this man. Mike has more to tell as they got to talk a bit alone.
We have to be at infusion at 8am. Mike will drop Trey and I off then drive to Hinkley , MN with Drake and Broc to meet Auntie and drop off the boys to her. It sounds like we don’t have anything planned for Friday so we are hoping that we can drive up to Granny’s on Thursday night (if we’re not too tired or something else doesn’t come up in the meantime) to meet up with the boys, stay there until Saturday night, drive back to this hotel and leave from here (much easier on Trey’s back to not have to do so much traveling in the car seat in one day) to our flight Sunday morning.
I’m about to pass out at this computer…zzzzzzzzzzzz
More later…
Xoxox, Cami
Our first appointment was at 9am. It was a neuro-psych meeting that started out with a lot of questions that began with “in the beginning…”so, describe your pregnancy”… on to a million question’s about Trey specifically. From there they took Trey and I in a separate room for at least 1 ½ hours. They tested him with stacking solid colored blocks then on to puzzles (starting with two pieces and adding up to four) but they turned them face down and not necessarily facing the correct way, then on to blocks that had different patterns on them in which Trey had to copy the pattern the doctor made with her set of blocks. They asked him questions like, “what color is the grass?”, what do you cut paper with?”, after that they showed him pictures and asked him the names of each, then showed him a set of four pictures and asked him, “which one do you eat?” For example, with only one being a hamburger and the rest being other objects. And finally they had wooden boxes with a different color felt glued to the front of each of them with tops that open. Every one had an object in them except the white one. The doctor started with two (one with an object and the empty white one). She took the object (horse) out of the red box, showed it to Trey than mixed around the white and red boxes, gave Trey the horse and asked him “where does it go?” She was not allowed to say the name of the object or the color on the front of the box. She then added all the way up to ten different colored boxes because Trey kept getting them right. She said that this test was just invented (by a doctor here in MN) and had only been used 9 times (Trey being the 10th) and that no child had got past four boxes but Trey’ memory scored him 100% on all ten J Mike and I had told her in the beginning when asked a lot of questions about Trey specifically that he had a great memory but wasn’t very verbal. I can’t wait until Thursday to meet with the doctor (she will be in our Thurs. feedback meeting) that invented this new memory test to see her reaction to Treys’ mastering her new test! He didn’t do well on the direct questions of “what color is grass?” but did great on everything else...we told you so. I wanted so very badly to help him but practically had to sit with tape over my mouth during every test – you all know how hard that was for me – haha!
From the Neuro-psych testing we went to have lunch. We stayed on campus and ate at the “Big 10” restaurant which was about two blocks away. It was snowing and we were freezing (except Mike and Broc, they loved it!!!).
We rushed back and meet with Dr. Whitley. He was such a gentle man who was so thorough and patient with all of our questions. He gave us two possibilities, leaning towards one much more than the other. One being MPS VI (let’s figure out why he’s not responding) or the other (which he believes is our case) is again the MSD. MSD (multiple sulfatase deficiency) is a disorder in itself that would mean that Trey could be deficient in up to 15 different enzymes. One of the enzymes is in fact the same that is missing in MPS VI which is why at first look they figured this is his diagnoses (and had no reason to look beyond this) but since he isn’t responding to the MPS VI treatment, we needed to pursue this further. Even though “text book” states that he would be deficient in 15 different enzymes, it doesn’t necessarily mean he is. Normally a patient with MSD would have a lot of “white matter’ in the brain and not function as well as Trey. The scary part is that he could regress at 10 or 12 or even 16 year old (no patient is the same) and although he may not mentally decline, he would loose control of his limbs (muscle control). *Please remember how tired I am, in case I’m not making myself clear~ at least I had this much, plus Mike can help explain it further (he, as well as all the boys are sleeping right now). Dr. Whitley wrote on the chalk board lot’s of scientific stuff (molecules, charts, etc.) but took his time to make sure we understood. Mike asked a lot a great questions and he can expand on this meeting. I cried a lot and am so scared but will save the heartache for the actual diagnosis (which by the way won’t come for three to four weeks later). The boys were in the room next to us playing their Nintendo ds and watching a movie…they were so good! Again, there’s so much more but we’ll leave it at this for now.
From there, Trey had a EKG and an Echocardiogram and was meet by the doctor who read these tests. She said that Trey’s heart was absolutely PERFECT!!! She said that the majority of the people she see’s doesn’t have this positive of test results. Dr. Whitley waited for us and said that this was great news. He also said that most MPS VI patients have some sort of heart problems (maybe another reason he’s leaning towards MSD).
Dr. Whitley then walked and waited with us down stairs to have Drake, Broc, Mike and I give blood for both bone marrow match and carrier testing. Drake lost his color in his cheeks and seemed a bit nauseous (remind me to expand on this). Broc and Mike did great (and me too). Broc wanted to know if the lady who took his blood was a vampire? Trey watched us all and was so inquisitive as to what we were doing. He was very adamant about his brothers getting a band aid for their boo-boo’s. This baby is so compassionate towards others!
Dr. Whitley then walked us over to another building to show us where Trey’s infusion would be tomorrow, introduced us to the head nurse and to the pharmacist…can you guys believe this VIP treatment? Drake was given some OJ and crackers (and Broc and Trey too – for being equal) since he still wasn’t feeling so great (poor baby…I truly didn’t think he would react this way). I have to say that even more than the boys seeing Trey’s infusion at St. Joes, being picked themselves along with me talking to them about Trey going through this sort of thing every week of his life made them so much more “in touch” with what their baby brother goes through…I think they will be more “understanding” from here on out.
And finally Dr. Whitely walked us to the parking garage tunnel and made sure we understood how to get from there to the infusion tomorrow. He shook the boys hands as well as Mike and I’s and told us he would see us tomorrow at Trey’s infusion (really, they do this???) Oh yeah, he then gave us a number to reach him at in case of an emergency…CRAZY, we know! We are so impressed with this man. Mike has more to tell as they got to talk a bit alone.
We have to be at infusion at 8am. Mike will drop Trey and I off then drive to Hinkley , MN with Drake and Broc to meet Auntie and drop off the boys to her. It sounds like we don’t have anything planned for Friday so we are hoping that we can drive up to Granny’s on Thursday night (if we’re not too tired or something else doesn’t come up in the meantime) to meet up with the boys, stay there until Saturday night, drive back to this hotel and leave from here (much easier on Trey’s back to not have to do so much traveling in the car seat in one day) to our flight Sunday morning.
I’m about to pass out at this computer…zzzzzzzzzzzz
More later…
Xoxox, Cami
Friday, November 14, 2008
Carebear Preschool's fundraiser
Hi everyone,
I have so much updating to do on the blog but have yet to find the time… go figure I really want to share all the stories of all the people who have come forward after reading the articles about Trey in the newspaper and all the fundraisers that have taken place as the result of. I will update as soon as we return home from MN. (fingers crossed and heavy prayers that we will find some answers there…we leave this Sunday).
The following flyer is another fundraiser that has been brought to our attention…again, complete strangers wanting to help Y If this is something that you may want to participate in (or know someone who may) OR you think you may be able to donate a basket to for the raffle, please call Ms. Mary at the number below. THANK YOU!
Hugs and Kisses,
The Lanes
p.s. of course I have to add a “cutie-patutie” picture of our little Treybo
CAREBEAR PRESCHOOL FRIENDS
We’re hosting a “merchant fair” on
December 6th along with breakfast and pictures with
Santa from 8:30-11:30 at our Fulton ranch site.
Anyone wanting to participate is welcome to set up a
table outside to sell your merchandise. Examples
would be, Pampered Chef, jewelry, Crafts, Baked
Goods, Skin Care Products, Services, Books,
Scrapbooking, etc, the possibilities are endless!
This year we are asking that you donate a basket to
o ur raffle. The proceeds from the raffle will be given to
The Trey Lane Family. Michael Trey Lane is a 3 year
Old boy who was recently diagnosed with MPS VI, an
extremely rare and life threatening genetic disorder. The
Proceeds raised will go to Trey’s Treasures trust fund
Which will be used for Trey’s medical expenses and
Support research for a cure. Check out their blog at
www.ourtreystreasures.blogspot.com.
If you are interested, please see Ms. Mary (480)
219-9049 at the fall’s or Ms. Tamela (480)
802-0058 at Fulton .
Thank you.
Monday, November 3, 2008
Great times ahead
Hi Cami:
I know now why writers have to be inspired.
God has a plan. he is working behind the scenes in your life right now,today. No matter what you may be facing, no matter what trials you may be going through. God has a plan to turn things around in your favor. He is orchestrating the right people to come across your path. He is orchestrating the right opportunities to open up to you. You may not always see it in the natural, but look with eyes of faith today.
Keep standing. Keep believing. Keep hoping. Keep following your heart.
Studies prove that during a hurricane, a palm tree will simply stretch and not break from the strong wind. It's bent and pushed over,and all the while it's root system is actually being strengthened and given new opportunities for growth.that is the same way we are built to be.There will be difficult times in our lives, things that would come against us trying to steal our joy, peace and victory. Because we have strong roots we are able to bounce right back. the storms will come. The winds will blow. But no weapon that is formed against you will endure.
Your strength and courage to fight inspires us all. **
I am so glad that your family enjoyed a vacation. Even with stress that pales in comparison to yours a small change of scenery always brings us back to the realization that our true blessings are right in front of us..our family.
Thanks for the pictures!
Hugs & Kisses to you always***XOXOOXOX
Melody
PS- This is a letter received by Cami. Encouraging words and thoughts help the Lane family so much right now. Please feel free to leave them a message or comment below.
Thanks Alexis
Where to begin
Hi everyone,
Where to begin? First I’d like to explain why we went to MN. without a confirmed appointment with the doctors there. If there was ever a time that I felt close to a “breakdown” that week was it. Between waiting for the phone to ring and the boys being overly anxious to go on the airplane…I thought I was going to loose it.
For us, that one phone call meant a chain of events taking place; a phone call to Biomarin, to St. Joes, to the geneticist, to the airline, to the rental car, to the hotel, to Mike’s work, to my family in MN, our friend watching the dog’s, to Trey’s preschool, the boys football coach, etc. What had happened is that every day I waited for the call and played telephone tag with the doctors scheduler in MN, the airline seat availability became more and more full – being a flight attendant, of course we were going “stand by”…is there another option? I got so worried that we were going to miss the appointment due to the fact that we wouldn’t be able to make it on a flight that I had decided (with the help of my mom) that we were going to purchase the tickets for the five of us and sit in the hotel room to await the phone call. At least this way the boys would be happy to be on their way and we would be 1,700 miles closer to Dr. Whitley when the call came.
Well as we all now know, the call never came…but everything happens for a reason. Mike and I haven’t felt that “normal” as a family since Trey’s diagnosis. We drove up to my Grandma’s home at the lake and spent the week there as carefree as we could be…all circumstances aside. Also, for the first time since Trey started his infusion, I didn’t worry that he was missing one (heck, it wasn’t working anyway). I truly felt like I had been given a mental break from the stress and worries of “life” while we were at the lake. The boys had the time of their life…give any boy a lake, a fishing pole and acres upon acres of woods to explore and you’ve got a recipe for “fun”! Yes, Mike included! Are you kidding, he probably had the best time (and so badly needed it)! We all got to spend precious moments with my 88 year old Grandmother who just two weeks earlier was checked into a hospital where my mom and aunt weren’t sure she would ever come home from. So you see…everything happens for a reason. God knew exactly what he was doing when he sent us to MN…we just didn’t know the reason until after we experienced it.
As a side note, the staff in MN knew I worked with the airlines and didn’t realize that I had bought tickets for the family and truly felt bad that we had spent the money. The doctor even offered to write a note to the airline explaining Trey’s spine condition if we wanted to turn around and come home. Also, if this wasn’t final confirmation that buying tickets was actually a “good thing”, my mom was trying to fly standby out on the same flight home as us but all of the airlines were completely booked full, causing her to spend 2 ½ days in Minneapolis before buying a one way ticket home to Phoenix! We never would have gotten home; trying to fly standby with a family of five…again, everything happens for a reason. As stressful as it was, and a close to a brain aneurism as I thought I was before we left, all that seemed to mean nothing as soon as I saw the smiles on Drake, Broc and Trey’s face when we told them to pack their bags…God’s plan was perfect
Less than a month later and we are headed back, only this time with a week’s full of appointments and hopefully answers that await us. We will leave Sunday, November 16th and return Sunday, November 23rd. This is what we have scheduled thus far per Dr. Whitley;
We are working on the final schedule for Trey's visit the week of November 17th. This is a partial and approximate itinerary. A more specific and detailed schedule will be sent in a few days as the appointment times and other consultations are finalized.
Monday, Nov. 17:
Morning: Neuropsych Assessment (Dr. Zeigler)
Afternoon: Cardiology (Dr. Braunlin)
Genetics (Dr. Whitley; either 1:00 or 2:30 PM)
Tuesday, Nov. 18:
TBA – possible infusion
Wednesday, Nov. 19
Sedation/Anesthesia: Needle biopsy of the liver. (This is a thee key test.)
MRI (head) and volumetrics (liver, spleen)
Thursday, Nov. 20
Spine Orthopedics (1:00 PM, Dr. James Schwender)
As you can imagine we are excited to get some answers yet at the same time so afraid what they will be. I have had so many sleepless nights since all of this began that to finally know from the “best of the best” what we are dealing with is what is needed to go forward. I thought when all this began that I would need some sort of anti depressants but I am proud to say that after a few ½ tablets of sleeping pills following those first heart wrenching nights, I have only needed my family, friends and most importantly my faith in God to get me through. I am trying to “Let Go, Let God” to trust that he will direct our path
Thank you to our family and friends who go through these trials with us and feel the hurt just as deep and we do. For those who try to understand our worries and pain, thank you! The sadness and unknown could take over our every thought if we let it. I have tried to live for today as the joy of the blessing given to us are right in front of our face Drake, Broc, Trey… and to miss the happy times would be missing out on so many wonderful memories that the boys are making and that Mike and I are the blessed recipients of. Yes, we are sad, worried, scared, stressed and yet we are also hopeful, faithful and BELIEVE that we are in good hands.
Love beyond measure,
The Lanes~
When the frosts are in the valley,
And the mountaintops are gray,
And the choicest blooms are blighted,
And the blossoms die away,
A loving Father whispers,
“This all comes from my hand”;
Blessed are you if you trust
When you cannot understand.
p.s. the attached pictures are from 1)Halloween 2)”Takedown” fundraiser – Trey is being held by “Wolf” from the American Gladiators 3-5)MN. 6) Trey’s other Halloween costume this year, he wore two…because he can
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