HAPPY NATIONAL MPS DAY
MAY 15TH
IT’S OKAY TO ASK US ABOUT MPS
IT’S OKAY NOT TO ASK US ABOUT MPS.
WE’RE A FAMILY NOT A TRAGEDY.
HONESTLY, WE KNOW, WE TRULY KNOW YOU CARE!
YOUR KINDNESS MAY NOT ALWAYS BE ACKNOWLEDGED
BUT IT IS ALWAYS FELT
Tuesday, May 19, 2009
A Warm Welcome
As part of “Courage”, the National MPS Society’s newsletter, they include a section in every issue called “A Warm Welcome”. The Society asked that I introduce our family by writing a column for their newsletter back in 2008 when Trey was first diagnosed with an MPS disorder…I wasn’t ready. I was asked again this past week and this is what I came up with. For those of you who are members of the National MPS Society, this should appear in one of the next two issues of “Courage” under the “A Warm Welcome” section.
Mike and Cami Lane who live in Chandler, Arizona with their three son’s, Drake (8 years old), Broc (7 years old) and Trey (MPS IVA) who just turned 4 this past April. Mike, our hero, has been a police officer for the City of Tempe for the past 12 years. When Cami (aka Mommy) finds the time to fit in a “bit of normalcy”, she take’s to her job in the skies as a flight attendant for Southwest Airlines.
Drake is a 2nd grader who enjoys art, music and sports. Drake participates in soccer, wrestling, flag football and swimming. Swimming starts the week after school let’s out where Drake will defend his 2nd place state record in the breaststroke. As the oldest of three brothers, Drake has proven to be the brightest and best big brother around. He is so protective of his ‘baby’, Trey that most times mom calls him, ‘brother hen’. Drake wants to be a professional football player when he grows up and you better believe we will nurture that aspiration...maybe the payout for such a lucrative career could fund a cure for his “baby”?!
Broc will complete the 1st grade in 18 days, just ask and he’ll let you know. Being the middle brother, Broc enjoys the best of both worlds~having a big and little brother. Broc always plays so sweet with his little brother Trey and forever includes him in all his fun. Broc is a gifted athlete who holds his own, ‘playing up’ in age on his big brothers athletic teams. In addition to being one of the fastest kids in the neighborhood in all age groups, Broc enjoys the outdoors, always with his shoes off. When asked what he wants to be when he grows up, Broc will answer a veterinarian 100% of the time.
And then came, “Mr. Busy”, Michael “Trey” Lane. Misdiagnosed at the age of two with MPS VI, Trey has gone through more than the majority of adult’s will in a lifetime. After enduring forty three infusions of Naglazyme ‘for nothing’ a multitude of tests later and just days before his 4th birthday Trey has now been correctly diagnosed with MPS IVA.
Trey is your typical preschooler who loves his peanut butter and jelly sandwiches, riding on his electric “racer”, Mickey Mouse, The Arizona Cardinals, his “Cardinal birdies” as Trey calls them and his new love…swim lessons. Aside from the usual life most four year olds live, Trey also attends physical therapy twice a week, and a new approach to brain/hand coordination type therapy once a week. Trey’s brothers, mommy and daddy also incorporate PT into his everyday playtime which is the “sly” approach to ‘work’ for a child with such a bone disorder. Trey is also a member of “HopeKids” which affords our entire family local events free of charge as a way of instilling hope to children with life threatening illnesses.
Although Trey stopped growing at about 2 ½ years old he is head and shoulders above the rest. Trey is such a kind and compassionate soul. Mike and I believe that God knew exactly what he was doing when he blessed this family with Michael Trey. Trey make’s our world go around, he brings a smile to everyone’s face he encounters and is the best baby brother two little guys could ever, ever ask for. According to daddy, “he is my little bit of somethin’ and a lotta bit of everything”.
Together with our family and friends we had started a non-profit for Trey known as “Trey’s Treasures”. With our family, friends and the community behind us we have accomplished grand things. Our fundraisers have included our very own “Trey’s Treasures” golf tournament, “Vegas Nights” with Spark of Hope, watermelon slices on the 4th of July, Usborne books sale, Mini pumpkins for a mega cause, Trey’s Treasure Chest for Hope dinner auction, Take Down for Trey, a neighborhood garage sale, Silpada jewelry party, a Swim-a-thon and car wash, WAMU grand opening dedication and fundraiser, Carebear Preschool fundraiser, a golf tournament in honor on my sister-in-law’s late father, a chili cook off, Tempe Police citizens Academy donations, Avon sales fundraiser, the Hard Chargers motorcycle ride, children who have raised money for Trey by opting out of birthday presents instead to give replaced presents to Trey, selling lemonade and popcorn, along with giving their winnings in contest’s to Trey’s medical fund and last but not least a kindergarten class that had 25 trees planted in a National forest in honor of Trey!. This year we are gearing up for another “Trey’s Treasure Chest for Hope” second annual dinner auction and “Dunkin Cops” dunk booth at the Tempe Town Lakes Oktoberfest. Due to the head and heartache that came with the misdiagnosis, we weren’t up to the 2nd Annual Trey’s Treasures golf tournament but have high hopes for next year.
Along with all the fundraisers, we have also been blessed to have Trey’s journey catch the attention of the media. Trey’s story was run in numerous newspapers and ran on many local television stations. Is it those eyes or those curls? We don’t know but what we do know is that what ever it is, Trey’s sweet looks have helped us spread the word and raise awareness of MPS (Trey’s blog alone gets a average of 20 hits a day from North America as well as countries far and wide). After just one article in the state newspaper, we were blessed to be brought together with Taylor (MPS VI) and his family as well as the honor of meeting one of the MPS Societies Board of Directors, MaryEllen Pendleton and her family. This media attention also bestowed us with the generosity of a few local gentlemen. One of these men provided Trey with free full body massages at every infusion he underwent in the hospital, the next provides us free photo processing until a cure is found and the other graces Mike and I with free car repairs and service indefinitely. These blessings come full circle and make myself as well as my husband whom as a police officer doesn’t often get to see the good in society, by opening our eyes to the GREATNESS in people and the love and concern they have for their family member, friend and child who is a complete stranger to them but who just the same is a part of their community.
And our story wouldn’t be complete without mentioning our own “Patch Adams”, Dr. Chet Whitley at the University of Minnesota . We would still be spinning if it weren’t for him and his team of astounding colleagues. The level of care and concern, the attention to detail, the infinite amount of time he gives his patients are with out question a representation of the best of the best. The MPS family is so lucky to have such a brilliant man on their team and we are so privileged to call him Trey’s doctor.
My strength not only comes from those near to me but although far, oh’ so close to my heart, my new and dear friends who are mom’s of children with MPS. Without Margo (Nathan MPS VI), Kaylene (Taylor MPS VI), Jenny (Holden MPS VI), Ellen (Isaac MPS VI), Jen (Eddie MPS IV), Cassandra (Payton MPS II) and Darla (Kikki and Justin MPS IV) to bounce thoughts, cares, concerns and tears off of, I don’t know how strong of a mom I could be for my baby Trey. I have come to recognize that the families of MPS are beyond an amazing group.
Our ‘normal’ will never be the same. In order for me and my family to survive, we too must find a “new normal”…whatever “normal” is anymore. In Don Piper's words: "The new normal is about living to bless. We can be a victim or a victor. It's a decision; it won't come naturally. Take your tragedy and turn it into triumph. Take your test and turn it into testimony. Take your disappointments and turn them into divine appointments. It's a decision. It's a choice. It's not what you go through but what you do with it that matters." Life is never problem-free. But when the bottom falls out, when tragedy strikes, then healing requires a change of perspective. Healing means you've got to find a new normal.
Thank you MPS Society for hearing our story and for all that you do for each and every one of us families that are “fighting this fight”. God Bless you all Y
Appreciation beyond measure,
Cami, Mike, Drake, Broc and Trey Lane
Mike and Cami Lane who live in Chandler, Arizona with their three son’s, Drake (8 years old), Broc (7 years old) and Trey (MPS IVA) who just turned 4 this past April. Mike, our hero, has been a police officer for the City of Tempe for the past 12 years. When Cami (aka Mommy) finds the time to fit in a “bit of normalcy”, she take’s to her job in the skies as a flight attendant for Southwest Airlines.
Drake is a 2nd grader who enjoys art, music and sports. Drake participates in soccer, wrestling, flag football and swimming. Swimming starts the week after school let’s out where Drake will defend his 2nd place state record in the breaststroke. As the oldest of three brothers, Drake has proven to be the brightest and best big brother around. He is so protective of his ‘baby’, Trey that most times mom calls him, ‘brother hen’. Drake wants to be a professional football player when he grows up and you better believe we will nurture that aspiration...maybe the payout for such a lucrative career could fund a cure for his “baby”?!
Broc will complete the 1st grade in 18 days, just ask and he’ll let you know. Being the middle brother, Broc enjoys the best of both worlds~having a big and little brother. Broc always plays so sweet with his little brother Trey and forever includes him in all his fun. Broc is a gifted athlete who holds his own, ‘playing up’ in age on his big brothers athletic teams. In addition to being one of the fastest kids in the neighborhood in all age groups, Broc enjoys the outdoors, always with his shoes off. When asked what he wants to be when he grows up, Broc will answer a veterinarian 100% of the time.
And then came, “Mr. Busy”, Michael “Trey” Lane. Misdiagnosed at the age of two with MPS VI, Trey has gone through more than the majority of adult’s will in a lifetime. After enduring forty three infusions of Naglazyme ‘for nothing’ a multitude of tests later and just days before his 4th birthday Trey has now been correctly diagnosed with MPS IVA.
Trey is your typical preschooler who loves his peanut butter and jelly sandwiches, riding on his electric “racer”, Mickey Mouse, The Arizona Cardinals, his “Cardinal birdies” as Trey calls them and his new love…swim lessons. Aside from the usual life most four year olds live, Trey also attends physical therapy twice a week, and a new approach to brain/hand coordination type therapy once a week. Trey’s brothers, mommy and daddy also incorporate PT into his everyday playtime which is the “sly” approach to ‘work’ for a child with such a bone disorder. Trey is also a member of “HopeKids” which affords our entire family local events free of charge as a way of instilling hope to children with life threatening illnesses.
Although Trey stopped growing at about 2 ½ years old he is head and shoulders above the rest. Trey is such a kind and compassionate soul. Mike and I believe that God knew exactly what he was doing when he blessed this family with Michael Trey. Trey make’s our world go around, he brings a smile to everyone’s face he encounters and is the best baby brother two little guys could ever, ever ask for. According to daddy, “he is my little bit of somethin’ and a lotta bit of everything”.
Together with our family and friends we had started a non-profit for Trey known as “Trey’s Treasures”. With our family, friends and the community behind us we have accomplished grand things. Our fundraisers have included our very own “Trey’s Treasures” golf tournament, “Vegas Nights” with Spark of Hope, watermelon slices on the 4th of July, Usborne books sale, Mini pumpkins for a mega cause, Trey’s Treasure Chest for Hope dinner auction, Take Down for Trey, a neighborhood garage sale, Silpada jewelry party, a Swim-a-thon and car wash, WAMU grand opening dedication and fundraiser, Carebear Preschool fundraiser, a golf tournament in honor on my sister-in-law’s late father, a chili cook off, Tempe Police citizens Academy donations, Avon sales fundraiser, the Hard Chargers motorcycle ride, children who have raised money for Trey by opting out of birthday presents instead to give replaced presents to Trey, selling lemonade and popcorn, along with giving their winnings in contest’s to Trey’s medical fund and last but not least a kindergarten class that had 25 trees planted in a National forest in honor of Trey!. This year we are gearing up for another “Trey’s Treasure Chest for Hope” second annual dinner auction and “Dunkin Cops” dunk booth at the Tempe Town Lakes Oktoberfest. Due to the head and heartache that came with the misdiagnosis, we weren’t up to the 2nd Annual Trey’s Treasures golf tournament but have high hopes for next year.
Along with all the fundraisers, we have also been blessed to have Trey’s journey catch the attention of the media. Trey’s story was run in numerous newspapers and ran on many local television stations. Is it those eyes or those curls? We don’t know but what we do know is that what ever it is, Trey’s sweet looks have helped us spread the word and raise awareness of MPS (Trey’s blog alone gets a average of 20 hits a day from North America as well as countries far and wide). After just one article in the state newspaper, we were blessed to be brought together with Taylor (MPS VI) and his family as well as the honor of meeting one of the MPS Societies Board of Directors, MaryEllen Pendleton and her family. This media attention also bestowed us with the generosity of a few local gentlemen. One of these men provided Trey with free full body massages at every infusion he underwent in the hospital, the next provides us free photo processing until a cure is found and the other graces Mike and I with free car repairs and service indefinitely. These blessings come full circle and make myself as well as my husband whom as a police officer doesn’t often get to see the good in society, by opening our eyes to the GREATNESS in people and the love and concern they have for their family member, friend and child who is a complete stranger to them but who just the same is a part of their community.
And our story wouldn’t be complete without mentioning our own “Patch Adams”, Dr. Chet Whitley at the University of Minnesota . We would still be spinning if it weren’t for him and his team of astounding colleagues. The level of care and concern, the attention to detail, the infinite amount of time he gives his patients are with out question a representation of the best of the best. The MPS family is so lucky to have such a brilliant man on their team and we are so privileged to call him Trey’s doctor.
My strength not only comes from those near to me but although far, oh’ so close to my heart, my new and dear friends who are mom’s of children with MPS. Without Margo (Nathan MPS VI), Kaylene (Taylor MPS VI), Jenny (Holden MPS VI), Ellen (Isaac MPS VI), Jen (Eddie MPS IV), Cassandra (Payton MPS II) and Darla (Kikki and Justin MPS IV) to bounce thoughts, cares, concerns and tears off of, I don’t know how strong of a mom I could be for my baby Trey. I have come to recognize that the families of MPS are beyond an amazing group.
Our ‘normal’ will never be the same. In order for me and my family to survive, we too must find a “new normal”…whatever “normal” is anymore. In Don Piper's words: "The new normal is about living to bless. We can be a victim or a victor. It's a decision; it won't come naturally. Take your tragedy and turn it into triumph. Take your test and turn it into testimony. Take your disappointments and turn them into divine appointments. It's a decision. It's a choice. It's not what you go through but what you do with it that matters." Life is never problem-free. But when the bottom falls out, when tragedy strikes, then healing requires a change of perspective. Healing means you've got to find a new normal.
Thank you MPS Society for hearing our story and for all that you do for each and every one of us families that are “fighting this fight”. God Bless you all Y
Appreciation beyond measure,
Cami, Mike, Drake, Broc and Trey Lane
Check list update
To catch up on all the happenings in Trey’s busy life, I thought I’d write a checklist of everything recent to bring us all up to date.
*Trey had a ‘happy visit’ to the dentist back in January. This visit was to get Trey familiar with the dentist office, having someone look and feel around in his mouth and also for the dentist and I to be on the same page as far as Trey’s dental health was concerned. I was so pleased with Trey’s dentist, he had done some research on MPS conditions and expressed to me that he was not only willing but also excited to learn along side us every step of the way. This very generous man also suggested that we might want to come for visits every three months as apposed to every six and that he would only bill every six months as far as insurance would go. Well, that said, we went back in April for Trey’s first cleaning and x-rays and the good dentist said Trey’s teeth and gums looked great, that Trey did wonderful and if we felt comfortable, we could come every six months until we have something to worry about, but that as of now, we should treat Trey like every other patient.
*Again, we were denied insurance help for growth hormone. I am in close contact with Trey’s endocrinologist who as we speak is appealing this for the second time. It has now been about 18 moths since Trey has gained a pound or an inch. My heart aches at the thought of him living his life at this height but have to put this pain in God’s hands and hope and pray that something good will come of all this in the way of research and medicine.
*It has been decided by Mike and I based on the following advice of Trey’ s doctor’s that we keep his port in place.
The advantages of taking out the Port-a-Cath are:
1.) Reduce risk of infection or damage to the catheter (which is relatively low, especially since Trey has not really had problems with it thus far).
Disadvantages:
1.) Trey could "lose" (permanently) one of the few locations in the body where one can put in such a cather.
2.) He would likely want to have an additional surgery in the future to put in a new catheter for the clinical trial, and this would require another surgical procedure.
Advise;
If it is bothering him or you, then it would certainly be reasonable to take it out now.
If it is not a significant problem, and monthly infusion of heparin is not a huge inconvenience, it would be reasonable to leave it in place.
Thus said, I will be ‘flushing’ Trey’s site monthly and pray that all goes well.
*The results from Trey’s EKG came back and all was well. This same test was preformed back in November in Minnesota but for it to ‘count’ as part of the Oakland study, it had to be administered within the past 90 days. Mike and I were so happy to see that both locations felt there was nothing to be worried about in the way of Trey’s heart at this time.
*Swim classes have begun and Trey’s is in his glory. He loves to go underwater and he kicks like crazy when it’s his turn on the turtle kickboard. Trey has express how much he like’s this swimming class so I have added him to a waiting list to go twice a week in hopes that not only will he learn how to swim but to also add to his weekly physical therapy.
*Trey’s third preschool session ended this past Friday yet so un-true to form, Trey wanted nothing to do with his graduation ceremony (not even the grass skirt or lei) and sat in my lap the entire performance. The next class geared towards preschool started yesterday and so far Trey is off to a good start. He had homework his first day and was so proud to bring it back to school in his backpack, just like his big brothers do. Testing for the two types of preschool the city offers will take place at the end of the month…we will let you know the results of that array of tests soon after.
*Yesterday was also our follow up appointment to Trey’s first hearing appointment. Again, fluid was found behind both of Trey’s ears. Mike and I decided that the next logical step is to have the tubes inserted into both ears in hopes of draining his little ears and giving him a chance to hear better as well as the anticipation that Trey’s speech will see instant improvement.
We are extremely grateful for all the love and prayers that come our way and again, can’t thank you enough for it all. If you feel like making a comment to Trey’s updates, please remember to click “comment” at the bottom of each update on his blog instead of replying back to our home e-mail. We are hoping to keep all comments on his blog site so that when we print it, it will be all inclusive.
With all sincerity,
Mike, Cami, Drake, Broc and Trey
*Trey had a ‘happy visit’ to the dentist back in January. This visit was to get Trey familiar with the dentist office, having someone look and feel around in his mouth and also for the dentist and I to be on the same page as far as Trey’s dental health was concerned. I was so pleased with Trey’s dentist, he had done some research on MPS conditions and expressed to me that he was not only willing but also excited to learn along side us every step of the way. This very generous man also suggested that we might want to come for visits every three months as apposed to every six and that he would only bill every six months as far as insurance would go. Well, that said, we went back in April for Trey’s first cleaning and x-rays and the good dentist said Trey’s teeth and gums looked great, that Trey did wonderful and if we felt comfortable, we could come every six months until we have something to worry about, but that as of now, we should treat Trey like every other patient.
*Again, we were denied insurance help for growth hormone. I am in close contact with Trey’s endocrinologist who as we speak is appealing this for the second time. It has now been about 18 moths since Trey has gained a pound or an inch. My heart aches at the thought of him living his life at this height but have to put this pain in God’s hands and hope and pray that something good will come of all this in the way of research and medicine.
*It has been decided by Mike and I based on the following advice of Trey’ s doctor’s that we keep his port in place.
The advantages of taking out the Port-a-Cath are:
1.) Reduce risk of infection or damage to the catheter (which is relatively low, especially since Trey has not really had problems with it thus far).
Disadvantages:
1.) Trey could "lose" (permanently) one of the few locations in the body where one can put in such a cather.
2.) He would likely want to have an additional surgery in the future to put in a new catheter for the clinical trial, and this would require another surgical procedure.
Advise;
If it is bothering him or you, then it would certainly be reasonable to take it out now.
If it is not a significant problem, and monthly infusion of heparin is not a huge inconvenience, it would be reasonable to leave it in place.
Thus said, I will be ‘flushing’ Trey’s site monthly and pray that all goes well.
*The results from Trey’s EKG came back and all was well. This same test was preformed back in November in Minnesota but for it to ‘count’ as part of the Oakland study, it had to be administered within the past 90 days. Mike and I were so happy to see that both locations felt there was nothing to be worried about in the way of Trey’s heart at this time.
*Swim classes have begun and Trey’s is in his glory. He loves to go underwater and he kicks like crazy when it’s his turn on the turtle kickboard. Trey has express how much he like’s this swimming class so I have added him to a waiting list to go twice a week in hopes that not only will he learn how to swim but to also add to his weekly physical therapy.
*Trey’s third preschool session ended this past Friday yet so un-true to form, Trey wanted nothing to do with his graduation ceremony (not even the grass skirt or lei) and sat in my lap the entire performance. The next class geared towards preschool started yesterday and so far Trey is off to a good start. He had homework his first day and was so proud to bring it back to school in his backpack, just like his big brothers do. Testing for the two types of preschool the city offers will take place at the end of the month…we will let you know the results of that array of tests soon after.
*Yesterday was also our follow up appointment to Trey’s first hearing appointment. Again, fluid was found behind both of Trey’s ears. Mike and I decided that the next logical step is to have the tubes inserted into both ears in hopes of draining his little ears and giving him a chance to hear better as well as the anticipation that Trey’s speech will see instant improvement.
We are extremely grateful for all the love and prayers that come our way and again, can’t thank you enough for it all. If you feel like making a comment to Trey’s updates, please remember to click “comment” at the bottom of each update on his blog instead of replying back to our home e-mail. We are hoping to keep all comments on his blog site so that when we print it, it will be all inclusive.
With all sincerity,
Mike, Cami, Drake, Broc and Trey
Tuesday, May 12, 2009
AMAZING GRACES
Mike and I are always amazed at how people near and far make donations to Trey’s account but never as far away as Switzerland . Today a $150.00 donation came in from Switzerland ! A complete stranger who gave so selfishly to a child he has never met…AMAZING the ability of people to feel the need to help. God Bless such generous people. Thank you from the depths of our soul.
Handprints
My Mother’s Day was so nice; the boys (the big one included) were all so good to me
Of course this day has turned into a very emotional one for me and to add to my own inner thoughts as I look in wonder at our three beautiful boys, I was given a card that Trey had made in preschool that sent me into a tailspin. Imagine knowing what we know and reading a poem such as this;
Sometimes I get discouraged
Because I am so small
And always leave my fingerprints
On furniture and walls.
So far so good, I actually thought at this point that this card was specific to Trey and that every child may have had their own poem.
But everyday I’m growing-
I’ll be grown up someday
And all those tiny handprints
Will surely fade away.
Okay, so I lost it! I fell to pieces wishing so badly that this could be true for Trey too. Drake and Broc didn’t understand why I was crying until they read the card and I’m sure you could imagine how the sweet smile on Trey’s face turned into a look of confusion. I was so amazed at how ‘grownup’ Drake and Broc were and the fact that they could comprehend my feelings of sadness as I tried to read Trey’s mother’s day card aloud. Trey in his usual fashion, landed a wet kiss on my lips, looked into my eyes and smiled.
The poem ended with;
So here’s a little handprint
Just so you can recall
Exactly how my fingers looked
When I was very small
I remembered these types of cards being the very best Mother’s Day gifts from Drake and Broc. I remember being so thankful that their teachers had the kids make handprints for me because it was something I hadn’t done since the boys were babies. This time around didn’t get the same reaction. I never thought something so straightforward like watching your child grow and admiring a simple handprint from them to recall how small they once were would bring about such sadness. I sat still praying silently that one day Trey too would grow and that one day I could compare his handprint from 2009 to one years later and be able to smile in amazement at how big all my boys have gotten. Please God hear my prayer
Monday, May 11, 2009
Happy Mothers Day!
I do believe that this email is the BEST mother’s day compliment I could ever imagine …Valerie’s words have made me feel so “rewarded” for what I go through as a person and most importantly as a M O M.
"Happy Mothers Day" to one of the most profoundly loved Mom's on the Earth...
"Trey's Cami."
What a tremendous start to the year, these first 4 months of 2009 have been for you, Mike & Trey. I pray for your continued endurance and strength. I know God made Mommy's with an extra "power button" that no one sees but us..we can dig deep down and push it, just when we think we can't go anymore. Your power button must look like the big red button on the "Staples" commercials! Wow. Where do you hide that thing? Your power is inspiring. Your will is inspirational. Your LOVE is not of this world, but from behind the gates of heaven. I will keep praying for you & your family. I loved the postcard you sent out to Trey's class..only you could think of something sooo creative and educational!!!!
I want you to know your work here on Earth will be felt for many more years after you are gone and in Heaven. I can't imagine your reception into the Lord's arms! The gates will be flung open and his angels trumpets will be saluting your endles efforts here on Earth. God Bless you Cami. I am so very proud to call you my friend.
Love, Valerie
Val and her boys
Me and My 3 little Men
"Happy Mothers Day" to one of the most profoundly loved Mom's on the Earth...
"Trey's Cami."
What a tremendous start to the year, these first 4 months of 2009 have been for you, Mike & Trey. I pray for your continued endurance and strength. I know God made Mommy's with an extra "power button" that no one sees but us..we can dig deep down and push it, just when we think we can't go anymore. Your power button must look like the big red button on the "Staples" commercials! Wow. Where do you hide that thing? Your power is inspiring. Your will is inspirational. Your LOVE is not of this world, but from behind the gates of heaven. I will keep praying for you & your family. I loved the postcard you sent out to Trey's class..only you could think of something sooo creative and educational!!!!
I want you to know your work here on Earth will be felt for many more years after you are gone and in Heaven. I can't imagine your reception into the Lord's arms! The gates will be flung open and his angels trumpets will be saluting your endles efforts here on Earth. God Bless you Cami. I am so very proud to call you my friend.
Love, Valerie
Val and her boys
Me and My 3 little Men
Friday, May 1, 2009
MPS and The Swine Flu
May 1, 2009
The National MPS Society has been closely monitoring the developments across the nation and the world regarding the spread and containment of swine influenza. We hope that all of our members are safe and healthy and would like to remind you of the serious nature of this illness.
Individuals with MPS and related diseases need to be extra cautious as they are at higher risk for complications from this or any infection. If there are confirmed cases in your area, please limit your exposure to public places including school, work, shopping malls, or other areas with a large number of people. This is especially important for those with MPS.
The National MPS Society has been closely monitoring the developments across the nation and the world regarding the spread and containment of swine influenza. We hope that all of our members are safe and healthy and would like to remind you of the serious nature of this illness.
Individuals with MPS and related diseases need to be extra cautious as they are at higher risk for complications from this or any infection. If there are confirmed cases in your area, please limit your exposure to public places including school, work, shopping malls, or other areas with a large number of people. This is especially important for those with MPS.
You said what?
Trey had another hearing test this past week (the first attempt was in MN) and again went into it with slight congestion. I was assured by the doctor that he would still be able to form a very clear opinion about what may be happening with Trey’s hearing and give me a few options at the end of the appointment. Trey was not very cooperative during the hearing test and therefore the technician along with the doctor concluded that the test itself could not be used. What was found was fluid behind both of Trey’s ears and the fact that he has a flat malleus (or hammer) as seen in both ears. Our options at the end of the appointment were; 1) try Trey on an antibiotic to dry up the fluid 2) have ‘tubes’ inserted into Trey’s ears. I asked if we could start with #1 and go from there. So, here we are more than half way into the ten day prescribed duration of the antibiotic with what I believe is ‘not doing the job”. At our next appointment I am pretty confident that we will be discussing option #2. Unless our new form of PT does the job on its own…more to come on this exciting find!
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