June 21, 2010…and so on
Dr. Schwender –spine
So this morning comes the “moment of truth”…did the curvature of Trey’s spine increase and if so are we headed for surgery anytime soon?
The x-rays were taken of Trey’s spine before we met with Dr. Schwender. Call me sensitive but I really wish the people who take these x-rays would wait to get the “perfect” picture of Trey’s spine and not the one where he’s leaning forward (don’t’ they know how important this one picture is ?) I’m so anxious about this being the straightest picture possible…ugh, I’m a ball of nerves.
The nurse walks in, hangs the x-ray over the lighted screen and walks out. The news we have waited a year for is now hanging in front of us..a full size x-ray of Trey’s spine. Mike and I can only stare and wonder, “does it look better or worse than last visit?” In my head it looks so much worse and again I think, “If only the girl would have waited for Trey to stand straight before she snapped the shot than maybe we would be sure to get the best news possible. And if not, do I ask that we retake the picture?” The “what if’s” are killing me right about now.
After our greetings, Dr. Schwender takes a good look at Trey’s x-rays, makes a few marks with a compass tool right on the x-ray at the point of Trey’s spine that seems to curve the worse. I can feel my eyes welling up with tears and my stomach turning into knots as Dr. Schwender begins to speak. We are told that the curvature of Trey’s spine went from 56 percent (one year ago) to roughly 64 percent today, give or take 6 percent for the margin of error. You know what I’m thinking…”yeah, the 6 percent that wouldn’t have been had they gotten a better picture”. Whew…I know that the doctor has to know Mike and I, (like most parents) would choose to believe that there is in fact a 6 percent error in Trey’s picture and that Trey’s spine actually only got worse from 56 to approximately 58 percent in a year. My tears turn to tears of joy. We are told that Trey has no scoliosis and that they wouldn’t consider fusing Trey’s spine and neck until a 70-80 percent curve was revealed and that for as long as we can steer clear of such an operation, we will, as we do not want to inhibit any growth potential he may have. We talk about the “not so great” x-rays that were taken in Arizona in that they didn’t seem to compute…I think the curvature number we were given was something like 34 percent (I’d love to go with that but I highly doubt any spine could improve that drastically in a matter of 6 months). We are told to try going to a pediatric hospital in Arizona for the next set of x-rays. At that time we will get a full length lateral x-ray and if all goes well, we won’t have to make a trip to MN in another 6 months (fingers crossed).
We brought up the growth hormone in relation to Trey’s spine curvature and it seemed that Dr. Schwender had a change of heart since the last time we visited. The last time he was a bit leery of the shots and this time he was “on board” stating that he wasn’t worried about his spine at this point and that of course we should stay on it for the strength it gives Trey, “of course, why do you think so many pro athletes are on it? Muscle recovery time is sped up”…enough said for me.
However, it is explained to us that Trey’s hips and knees should be looked at by a specialist and that Dr. Schwender believes that a surgery as soon a Christmas to correct both problems may be in the works…I am panicking.
*great news, the hip and knee doctor can see us tomorrow so we’ve added another appointment and moved around a few to keep us on tract…looks like we are in for another long day.
Dr. Whitley-genetics
Happy to see Dr. Whitley but “note to self”, schedule appointment with Dr. Whitley after we see all the specialty doctors so that we can relay to him the up to date official test results instead of just mine and Mike’s observations…oh well, we live and learn. Dr. Whitley was able to pull up Trey’s x-rays taken from earlier this morning and was happy to see that Trey had no signs of scoliosis and that there was only a slight worsening of Trey’s back. He talked with us a bit about the new doctor and what those procedures might in tale should those new x-rays prove the need. We also talked a bit about the growth hormone and our thoughts on it. We had Dr. Whitley take a look at Trey’s ears/tubes and got into a conversation about the possibilities of Trey benefiting from hearing aids in the future.
We tried to get in to see an audiologist and ENT while we were in MN but had no luck with the last minute appointments (another note to self). We talked about Trey’s teeth, the research taking place in Oakland later this year and even about Trey’s overall well being (Kindergarten next month, PT, swim lessons, water therapies and massage therapy). Dr. Whitley was so patient with us and gave us more time than we even had scheduled (the tech was very ready to start on Trey’s EKG and came tapping on the door more than once to start that procedure).
A comprehensive exam was done on Trey as well as pictures taken by Dr. Whitley to use in his teachings of MPS IV and further education. Trey was such a “ham” as Dr. Whitley snapped away…even the doctor couldn’t help but laugh at Trey as he began showing off his muscles for the camera.
Dr. Braunlin-cardiology
As we all walked into the room for Trey’s EKG and echocardiogram Trey looks up to me and says, “hey mom, you remember this?...it’s the jelly test”. I was tongue tied for a moment and amazed at the memory of this child. Mike asked a question during the test and all I understood was at that moment they were measuring the “injection fraction”, that Trey’s was 52% and that 50%+ was in the normal range. This test measures the injection or squeeze of the blood in and out of the heart.
After the tests were complete, Dr. Braunlin enters our room with a skip in her step. She seemed so happy to announce that Trey had an “A+ Organ”. She went on to say that Trey had no thickening and no leaking of his valves and that his heart looked remarkable! LOVE, LOVE, LOVE this news as you can imagine… right up there next to the spine x-rays is the test results of Trey’s heart, so this was a huge relief for Mike and I to hear (of course I cried). Dr. Braunlin asked us if Dr. Whitley did our genetic marker work up because she was really curious to take a look at it, seeing that Trey is her ONLY MPS patient without a single thing wrong with his heart.
We thanked the nice doctor as we tell each other “same time, same news, next year”. Thank you God for this good news!
Dr. Polgreen-endocrinology
It is always such a pleasure to see Dr. Polgreen, she is so kind and gentle spirited and can take her immense knowledge and relay it to us in such laymen’s terms.
The only bad part about her visit is that it always involves a blood draw. Trey was SO NOT HAPPY to get a “shot” and it seems that the older he get’s the harder they are on him.
We talked about the fact that Trey has had no significant growth with hGH but that the strength it give’s him is such a welcome side effect in physical therapy, with his swimming and just in every day life. Dr. Polgreen says that the lack of growth may be due to the dose being too low as indicated by the low IGF-1 levels. She also reported that Trey’s growth plates are in fact still open so we have time. Our plan is to give Trey a break while we are on vacation and stop the GH shots all together and begin again after we return home. We are going to continue at the current dose and increase the dose after two weeks. After being on the increased level, we are to recheck Trey’s IGF-1 levels. We will continue at this dose over the next year. Other options were discussed for us to talk about if no growth is achieved at this increased level at our appointment in a year from now. Specifically, I asked about Increlex but was told that Trey’s IGF-1 was not severely deficient enough to try this new to the market (approx. 2 years) drug. We were also told to increase Trey’s vitamin D levels as his are at the bottom of the normal range …go figure, with us living in Arizona you’d think all the sunshine would have those levels bouncing off the chart!
Dr. Phillips-pulmonary
Talk about a cool doctor…this was the first time meeting Dr. Phillips as Dr. Regelmann was out of town. Dr. Phillips had such a warm disposition and took all the time needed to be sure every one of our questions were answered and that no stone was left unturned.
Again it was decided that Trey was too young to perform a pulmonary function test (PFT) and that possibly at 6-7 years of age could such a test be given. We talked all about Trey’s everyday activity and how he seems to function during and after such activities. We explained that with vigorous activity, Trey will have fatigue but it is unclear to the doctor at this time if this is a pulmonary limitation.
Again a sleep study was brought up and again I explained the results were nothing but positive but we can’t seem to retrieve the original transcript of the study done over two years ago. It has been recommended that an overnight home pulse oximetry study be conducted to detect desaturation. A formal polysomnogram should be performed if the overnight study comes back abnormal.
We were also give prescriptions to have on hand should Trey come down with the flu and a saline rinse was recommended should a respiratory infection occur. Dr. Phillips offered up his recommendations on everything flu, cold, upper and lower respiratory related. He was great with Trey and outstanding towards Mike and I’s concerns.
Dr. Walker-hips and knees
Over to Gillett’s Children’s Hospital where which Mike and I were so impressed. The system here is so “well oiled” and works so smoothly. In and out from one door to the next without ever having to wait for any amount of time in any one area sure does make this trip easier on us. From check-in to weight and measure, to vitals, to x-rays, to consultation with the doctor’s nurse to a visit with Dr. Walker himself…everything was so effortless.
Dr. Walker had looked over Trey’s x-rays before he came into the room to visit with Mike and I. Trey’s lower extremities were discussed with us in length. The recommendations are that Trey has surgery on both his knees and his hips (not necessarily all at once). Trey’s “knock knees” could improve by doing a procedure known as “stapling” using an “eight plate”. However this does require additional growth for Trey’s condition to improve. Also, the plates would have to be removed in a year, resulting in another surgery.
The second surgery (possibly two surgerys to complete this process) is in regard to Trey’s hip subluxations. Dr. Walker thinks Trey will require bilateral hip surgery including bilateral femoral and bilateral pelvic osteotomies. In English, they want to carve out and relocate Trey’s “ball and socket”. In other words, deepen the hip socket, break his femor bone, then bend it and stabilize it with a metal plate allowing it to swivel below his hip socket. The ball and socket aren’t “jiving” and if left untreated “Trey would be at increased risk for developing degenerative joint disease of his hips, resulting in hip arthritis. I won’t even go into the details of what would have to be done to accomplish such a surgery, not to mention the 3 month recovery time (at which time a body cast would be needed and Trey would have to learn to walk again).
Dr. Walker was so informative and so thorough in his explanation. Mike and I thought we should give both surgeries some thought. Immediately we decided against a Christmas surgery and even concluded that June 2011 would be too soon. Dr. Walker let us decide and was fine with our decision to come back in a year to discuss these options and revisit Trey’s x-rays again at that time to decide where to go from there. He told us that he believes that we could wait a year or two unless Trey’s situation changes and he starts having more difficulty walking, starts getting pain or the x-rays start to show worsening problems.
My thoughts are #1) as far as the knock knees go, Trey would have to grown for that surgery to even help and so far I haven’t seen any MPS IV patients much taller than 3feet tall, #2) as for the hip’s…this extensive and intrusive surgery would only help Trey not to feel the discomforts of hip arthritis in his later years? How many years are we talking because I believe that at the rate medicine and the technologies that advance with the field are progressing there just may be something more advanced and less abrasive to help Trey’s condition. Plus with ERT possibly around the corner, who knows, maybe that too will provide amazing result’s…and then there are always miracles! With all the PT Trey does, maybe he will rewrite the books.
When family and friends ask, “how did Minnesota go?”, I am always at a lost for words. I have come to the realization that our medical visits to Minnesota will be to track the progress of Treys disease, that most likely the news will be “stable” or an answer to what degree the disease has taken over Trey’s tiny body. I guessing that never will we hear that anything has gotten better due to the mere fact that MPS is a progressive disease. We know that the bone abnormalities that have occurred in Trey’s body can not be reversed, not through physical therapy nor through enzyme replacement therapy. We know that Trey is missing the enzyme to replace his cells causing damage throughout his body; bones, tissue, organs, etc. We know that there is no treatment nor cure, but what we do know is that prayers work and miracles can happen. And with that said…please keep Trey in your thoughts and prayers, please keep up with his journey through his blog and please know that we "feel the love" and can't express how much the love and support mean to us.
Heading up North...
and now a weekend getaway...lucky Trey, lucky us! And a huge thank you once again Gia and Baxter for not only offering up your beautiful cabin for one weekend but for three separate weekends to Trey's fundraiser in order to generate more donations to his medical fund!
I come in the room and tell my dad that I sure hope he wasn't planning on relaxing any time soon as Trey was "motoring" his mouth asking question after question...I wondered if my dad was getting a bit exhausted of the constant talking and questions yet he replied with, "are you kidding, this is my bonding time with my buddy". It was like Trey understood because he looked at me, looked at my dad, looked back to the tv and on he went with his conversation...it was so cute to hear him and to listen to my dad's comments back to Trey like he was conducting a conversation with a peer.
My Granny’s 90th birthday was a great time for her. It was so nice to see family and friends that we haven’t seen in years. 
The 4th of July was so much fun at the lake. Seeing the fireworks light up the lake was a beautiful sight. Mike and I have decided that our annual visit to the University would be best spent in late June early July…it beats the Arizona heat any day! 
We had such a fun time and I'm sure the memories the kids made are irreplaceable. We are so lucky to have my grandma 3 hours north of the University, where life takes us twice a year.
After our greetings, Dr. Schwender takes a good look at Trey’s x-rays, makes a few marks with a compass tool right on the x-ray at the point of Trey’s spine that seems to curve the worse. I can feel my eyes welling up with tears and my stomach turning into knots as Dr. Schwender begins to speak. We are told that the curvature of Trey’s spine went from 56 percent (one year ago) to roughly 64 percent today, give or take 6 percent for the margin of error. You know what I’m thinking…”yeah, the 6 percent that wouldn’t have been had they gotten a better picture”. Whew…I know that the doctor has to know Mike and I, (like most parents) would choose to believe that there is in fact a 6 percent error in Trey’s picture and that Trey’s spine actually only got worse from 56 to approximately 58 percent in a year. My tears turn to tears of joy. We are told that Trey has no scoliosis and that they wouldn’t consider fusing Trey’s spine and neck until a 70-80 percent curve was revealed and that for as long as we can steer clear of such an operation, we will, as we do not want to inhibit any growth potential he may have. We talk about the “not so great” x-rays that were taken in Arizona in that they didn’t seem to compute…I think the curvature number we were given was something like 34 percent (I’d love to go with that but I highly doubt any spine could improve that drastically in a matter of 6 months). We are told to try going to a pediatric hospital in Arizona for the next set of x-rays. At that time we will get a full length lateral x-ray and if all goes well, we won’t have to make a trip to MN in another 6 months (fingers crossed).
We thanked the nice doctor as we tell each other “same time, same news, next year”. Thank you God for this good news! 
Again it was decided that Trey was too young to perform a pulmonary function test (PFT) and that possibly at 6-7 years of age could such a test be given. We talked all about Trey’s everyday activity and how he seems to function during and after such activities. We explained that with vigorous activity, Trey will have fatigue but it is unclear to the doctor at this time if this is a pulmonary limitation. 
Dr. Walker had looked over Trey’s x-rays before he came into the room to visit with Mike and I. Trey’s lower extremities were discussed with us in length. The recommendations are that Trey has surgery on both his knees and his hips (not necessarily all at once). Trey’s “knock knees” could improve by doing a procedure known as “stapling” using an “eight plate”. However this does require additional growth for Trey’s condition to improve. Also, the plates would have to be removed in a year, resulting in another surgery.
Dr. Walker was so informative and so thorough in his explanation. Mike and I thought we should give both surgeries some thought. Immediately we decided against a Christmas surgery and even concluded that June 2011 would be too soon. Dr. Walker let us decide and was fine with our decision to come back in a year to discuss these options and revisit Trey’s x-rays again at that time to decide where to go from there. He told us that he believes that we could wait a year or two unless Trey’s situation changes and he starts having more difficulty walking, starts getting pain or the x-rays start to show worsening problems.
