Wednesday, July 28, 2010

I'm a Big Kid Now!


Day one of Kindergarten was actually a pretty easy morning for both Trey and I. As for Mike well, he always seems to take everything in stride. The boys had decided they wanted to ride the bus the from the get-go. Mike and I loaded them on with Trey in the front row in his 5-point harness seat belt and Drake and Broc the row behind (by making a few phone calls and getting the doctors in Minnesota to write a permission note, he was able to ride the same bus as his brothers)!!!
We followed the bus to school to know it's route and to help Trey to his new class. After hanging out with Trey for awhile and about 7 kisses later, I leaned in for one more kiss before leaving but was denied by Trey, saying, "that was enough". Mike and I left the classroom, I looked in at Trey being so big and independent and began to cry. Thank you Chantel (my friend who's daughter is also in Trey's class)for waiting for that moment to hug me, knowing that Trey is our youngest, our last, our baby.
So only the first part of the first day of Kindergarten day was that easy because come pm...chaos erupts. Rewind a few weeks at "meet the teacher night" when I had asked Trey's teacher how I should fill out the "transportation form". I explained that although the boys would be riding the bus, I thought Trey may have to ease into it and would want us to take him to school the first day or two.
Well, Mike and I decided not to push the issue and to let Trey decide on that first morning of school if he wanted us to take him or ride the bus. I should have known, Mr. Big Shot wanted to ride the bus with his brothers. So like I said, the morning went off with out a hitch but Trey's teacher didn't know that Trey took the bus this morning yet remembered that I had told her Trey would most likely go to parent pick up for the first few days...oops! I didn't confirm with Mrs. Dean that Trey chose the bus from Day 1.
Fast forward to 3:15pm...there we are, all ready for the bus to drop off all three of our kids. I've got my camera in hand and just can't wait to see Trey's face. Off come's Drake and next comes Broc but NO TREY! Drake and Broc were told that I came to school and picked Trey up so they felt okay to leave on the bus from school to home without him. I panicked for a moment, we all jumped in the car and off to school to get Trey. I had left my cell phone and home phone in the house while waiting on the corner for the bus (hey, I remembered the most important thing, my camera). In the meantime we missed all the calls from the school stating that they had Trey in the front office. I think they had called a total of four times (twice on each phone) so I thought Trey may be sad thinking we forgot him but NO...he was calm, cool and collected. Trey was completely fine, sitting next to a little girl and reading his new "homework" from his backpack.
We love the school the boys go to and having three Lane brothers in attendance, everyone knows us so I knew Trey would be safe but wasn't so sure about his state of mind...I guess I forgot that it's Trey were talking about here, ha-ha.
Well, now that that's over and all three of the boys are home safe and sound from Trey's first day of Kindergarten, Broc's first day of third grade and Drake's first day of fourth...what a great story to remember for years and years to come.

A Big Bump and A Big Bummer!

Due to the fact that Trey got a "whopper" of a bump on his head that accompanied a headache and beyond, we were unable to stop by Justin and Kianna's car wash fundraiser. The boys each dug into their piggy banks (into the donate section of their banks)to send money to Justin and Kianna for not being able to join them. #1, I am so proud that any of their money ever makes in into the "donate" section of the
#1, I am so proud that any of their money ever makes in into the "donate" section of their banks, and #2 am even more proud of how easy it came to the boys to give to others.

Yeah, Yeah, Yeah!

Okay so we all know (meaning Mike, Drake, Broc and I)how much Trey loves music and that when ever Drake's MP3 Player is missing the first person we look to is Trey. Well, how cool is this??? Our awesome neighbors and our good friends called to say that they had just upgraded their IPods and wanted to know if Trey would enjoy their extra one? Are you kidding? Who does that? Only the type of people the Cavner family are! They are ALWAYS thinks of us and always going over and beyond for the kids and Mike and I. Case in point, Michelle is my friend who had the photos sitting donated to our family last year (which resulted in priceless pictures of the boys for me to cherish forever and forever). Anyway, as if the IPod wasn't enough, Eric, Abby and Page came over to help teach us how to download songs onto Trey's new IPod and brought with them a new pair of DJ headphones...Trey was smiling ear to ear.
To see this child dance to Hanna Montana, Selina Gomez and his Bible School tape is the BEST! A huge hug and thank you to our friends for thinking of Trey, never imaging the level of happiness it has brought to his days!

Meet Your Teacher

Tonight was "Meet Your Teacher" and Trey was in rare form...he is so ready for Kindergarten! We are very lucky to have the same teacher Broc had in Kindergarten, Mrs. Dean.
Mrs. Dean is a wonderful person, so kind and compassionate. We love her and love the fact that she knows our family. It was so sweet how Mrs. Dean must have taken note of where Trey sat and claimed his seat in his new classroom when we visited his room last month because she made sure Trey's new chair was in that same spot, just like he called it. We are off to a great start!

From an Otter to a Seal!

Yahoo-Great News! Trey has graduated from an “Otter” to a “Seal” at his swim school!!!
I can’t begin to express the feeling of pride Trey exhibited when it sunk in that after a year and 3 months, he did it…he really did it! Ever since we returned home from Minnesota, Mike and I have been working really hard with Trey on accomplishing the skills his swim teacher’s told us were required of him to graduate to the next level.
We knew he was so close so we practiced and practiced and practiced…having fun over the summer break with your family, swimming in the pool, learning new skills and a lot of PT at the same time… the perfect opportunity for Mike and I to really work with Trey. Trey is such a good sport; he would push himself daily and take breaks only to begin again and to show Drake and Broc his new “tricks”. YOU GO BUDDY~ WE ARE ALL SO PROUD OF YOU!!!

Pray for Caleb

*Caleb bottom row, 3rd from lft w/ his "magic cap" Coach Randy top row

Okay so bad news comes in set's of three...we are DONE! I think God is testing me because no sooner do I get down on my hands and knees and plead for mercy do we receive an e-mail from the boys' soccer and flag football coach that his son, Caleb and wife, Cher had been in a very serious car accident over the week of the 4th of July. Coach Randy and his family are spectacular people to say the least. Drake, Broc and Trey love Coach Randy (Trey calls him Uncle Randy) and Caleb, they sat silent when I read them the news. Cher is doing well but Caleb suffered from a TBI - Traumatic Brain Injury. As of today, by the grace of God, Caleb is recovering beyond expectations. Please keep our friends in your prayers! www.caringbridge.org/visit/calebgunzer

*photo from the banquet of the first team the boys played on together

No!!! More Bad News

So often I question the saying, "God only gives you what you can handle"...because at this moment I feel like I couldn't possibly handle not a single ounce more! As if not getting to say goodbye to my puppy wasn’t enough, low and behold today’s mail holds in it a few transcriptions from the doctor appointments we had in Minnesota. I assume that the one from Dr. Braunlin, the cardiologist will be short and sweet because as she reported to us on June 21st, Trey’s heart is remarkable! What more is there to report?... so I open it first. Well, the letter states, “on preliminary read his cardiac valves were reported to have no thickening. On final read of the echo, mild thickening of the mitral (inflow) valve was noted.”
Honestly, I feel deflated, like someone popped me and not all the air left my body so another someone popped me again, making sure I would be left flat and unable to float. Seriously, I feel like I am drowning, unable to float and again question that He only gives us as much as we can handle. I have no idea what this “thickening” means because I didn’t ask any questions because at the time there was no need to ask a question…Trey’s heart organ was given an A+! My first thought was to email my good friend Margo as I recall her son, Nathan (MPS VI) also having some sort of issues with his heart. Margo said that Nathan did in fact have issues but ever since ERT, there have been no reports of progression. I can only pray that the ERT for MPS IV is on its way. From what I read, the number one cause of death in MPS children is heart failure. My next step will be to contact Dr. Braunlin and begin asking questions. Please keep Trey in your prayers.

My Baby Girl


I have to admit that it has taken longer than usual for me to update Trey's blog after returning from a trip. My main reason is that I am still recovering from the loss of our female puppy, Laci while we were in Minnesota. Yes, we still call them our puppies, and our babies, and my little girl (Laci), and Mike's big boy (Tate). And yes we know they are 11 1/2 (Laci) and 12 1/2 (Tate) and are far from babies.
To give you a bit of history, Mike and I bought Golden Retrievers with the mindset that we would have kids some day and that Goldens would be the "perfect pet"...Laci was all that and more! In fact, I always called her the perfect pet, and Laci licky-wag because she was always so excited to see us, she would wag her tail furiously and lick and lick and lick (if we let her). The kids loved her oh, so much and she loved the kids in return...she was honestly, the "perfect pet" for the boys.
We were all afraid of leaving Tate,the older one with the health problems for such a long time so we made a big fuss over saying good bye to him, told Laci to take care of her big brother and even made them ground beef before we left. Well as God's plan would have it, Laci was the one who didn't make it through the long absence with out us. Our neighbor, Jen was everything we could have asked for in a sitter. The vet had told us over the phone that Laci's spleen had ruptured and that she more than likely only had 48 hours to live. IF it would have been ANY other day...like a day we were in the cities or the day after my Grandma's party, Mike and I keep saying that we would have flown home but being the day before my Grandma's big 90th birthday party (being 90, would she be around to see 91...how do I make that choice?) and being so far from home, we made the decision to follow the vet's recommendation and let our baby girl follow the "rainbow bridge". Before the vet released Laci from her pain, he allowed us to talk to her over the speaker phone for as long as it took...we all talked to her in our bravest, most "normal" voice and said all the loving things we would say to her on any normal day. The most touching part was that the vet said as we spoke, Laci's eyes stopped darting, her shallow breathing became more normal and her heartbeat increased a bit...if only for that moment she knew that she was not alone and again truly felt the love we had bestowed upon her all her life.

We are having the hardest time with the grief of loosing Laci because we never got to say goodbye. Knowing your pets are old, bracing yourself for the complications that come with old age, being able to hold, kiss and love on them one last time is all part of the process. With our story, none of that was possible. Laci wasn't sick and acted like a puppy until the day we left...we told her to take care of Tate never imaging that it would be the last time we'd see her.
The boys were very sad that day in Minnesota when we made the decision as a family to free Laci from her pain but were in a much deeper state of sadness when we returned home to Arizona without Laci greeting us at the front door. We relived the sorrow not once but twice. The boys are so happy that Tate is still with us and love on him more than ever and because we've had Tate as long as we had Laci, we all feel like a part of her is still with us in him.
Mike and I were so scared that Tate would begin to go "down hill" fast without his "sister" by his side, but maybe due to the fact that he can't really hear or see out of one eye and is pretty old himself, it's not affecting him like it would have had all his senses been in tact...thank God for that.

At the Lake for Granny's 90th Birthday

On our way up North and worlds apart from where we were and what we have been dealing with...a mental break for us, a physical break for Trey. We welcome the “slow life” with open arms! Here we are on the long dirt road that leads to my Granny's home. Trey is as happy as they come and so excited to see his brothers!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.
Granny was so happy with the party and was in absolute heaven with all her grandkids and great grandkids at her home to help her celebrate her very special day. 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.

Fun times;
Mike told Trey to hold his fishing pole and to watch the bobber because if it goes down, it means he caught a fish. Wouldn't ya know, the minute Mike handed over the pole to Trey, the bobber goes down. Trey tell's Mike and up they pull Trey's first fish of the summer! The smile on his face was priceless...Trey really enjoys fishing with his daddy.

I had remembered swimming the width of the lake at about the same age as Drake and Broc (although my mom insists otherwise) and thought it would be fun for the kids to give it a try. Off they swam and within seconds Drake pulled ahead of the pack and ended up being the only one to make it across (Broc swears that he made it too and that he didn't get any help from Mike but Drake still has the verdict out on that one...I wouldn't know, Drake pulled so far ahead of the group that I jumped in on a raft to catch up with him to make sure no other boat would run over his little bobbing head in the big, big open space. My little "fish" celebrating his victory!

The coolest "Blue Lagoon" picture of Broc and Camryn (my niece)

Tuesday, July 27, 2010

MN Day 3 and on...

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...