Too Close for comfort…

Cami and Mike,



These are the "provisional" results on your family, i.e., for the Morquio syndrome type A "carrier" status. ("Heterozygous" means

"carrier".) We will not issue the actual final report until we have sequenced the entire gene for each person, and exon 1 is still a problem that we are working on. 'Hope this helps, and that you are all well!



Warm regards,

Chet

----------------

Michael Lane (Sr) is heterozygous for the mutation Q273X



Cami Lane is heterozygous for the mutation Y385X



Broc Lane is heterozygous for the mutation Y385X



Drake Lane is heterozygous for the mutation Y385X



Michael Trey Lane (Jr) is heterozygous for the mutations Q273X and Y385X





Too Close for comfort…



Through the tears I write this thinking of the “what if’s” that take over my every thought at this moment. Mike and I were playing a game of chance without ever knowing it. Seeing the results of the “carrier status” and knowing that Drake and Broc were so close to being affected…I fell so helpless and weak. My mind races back to all three of our miraculous pregnancies and the pure bliss they brought to our young, naive lives. Knowing what we know now, I thank God for the lack of knowledge. I thank God for allowing me to cherish three remarkable pregnancies, I thank God for the three beautiful babies Mike and I have created and can’t imagine the emptiness we would be living had we known what we know now. These are the three children God has chosen to be ours and how fortunate we areY !



In this instance, “Ignorance is Bliss” The fact that we had no idea this disorder was a part of our story was a blessing in disguise. For this is how “our story” was written and was not to be changed. How lucky we are that life was so easy at the time and that we were blessed with the three angels we were…had we known what we know now, I’m afraid to think how different life would be.




Seeing these results in black and white are chilling to me…all I can think is that I passed this gene on to all three of my babies. Of course I always prayed for the best and after a while even thought the outcome could be nothing but the best. So when the results hit you like a ton of bricks between the eyes, it hurts! My heart aches, my body is weak and my thoughts are numb. I wanted so badly for this not to have to be a part of Drake and Broc’s future too. One day as Grandparent’s-to-be, Mike and I will be sure to provide our son’s will all the facts they need…who knows, by the time they decide to conceive, maybe prenatal testing for the MPS disorders will be part of the prenatal protocol J



“With God behind us and His arms beneath us we can face whatever lies before us”

Responses that touched my ♥HEART♥

Hey there,
Another "comment" along with Melody and Gina's ??? Is this going to work?

Cami:

I just have to tell you how much I really admire your faith. Your family
has been dealt something that could easily have you be angry. I always want
to feel strong in my faith and convictions, but there are times that I
don't.

Who knows, maybe this is all part of the big plan. You are a catalyst to
show people that you can be strong and have faith thru adversity.

I just wanted you to know that there is something good coming from all this.
I am just sorry that it is at your family's expense.


-Brenda

Dear Cami,

You have been a rock, an advocate, a scientist, a researcher, a geneticist, a teacher, a doctor, a nurse, but most importantly a wonderful mom. God knew what He was doing. He gave you a special blessing. When you pray for strength, God does not give you strength, he gives you the opportunities to be strong, etc. I am in awe of you and all of your hard work. My heart goes out to you and your family. You are in my prayers.

Much Love to you and Yours,

Gina



Gina,

Again I am in tears…you made we feel so strong, made me aware of my inner strength because on the outside I feel so weak and frail. Thank you for lifting my spirits and keeping “the fight” within me, in me.

I love you my long time, dear friend!

Cami


Hi Cami:

I am so glad that you are everyday getting closer to all of your answers. While reading this I was remembering when we tried to have our babies and how I really never knew that there was only really one special day or time in a month that you ovulate allowing a pregnancy to even happen. In our early years we are so full of sweet treasures that later become our destiny's. I am sure not anyone would have ever thought to be tested for these things. This is truly what was supposed to be. Oddly that feeling must be some kind of comfort. We can't know everything and we aren't really in charge of our lives. We just do the best we can. You are still my "Hero". You take each day at a time and your are relentless in your quest. No one could do it or recall it better.



Thanks for sharing and you are always in my prayers..



XOXOXOOX, Melody

Again and again your words touch my heart, my soul…thank you for making me see what was meant to be in a new light

Hugs, Cami

We cannot learn without pain. - Aristotle

Hits home…thought I might share, Cami


Joy Comes In The Morning

We cannot learn without pain. - Aristotle

As a parent, I have tried not to protect my children from the very things that led me to realize that I needed Jesus. Of course I care for them and watch out for them and protect them from danger, but I cannot ignore the fact that pain and experience are two of life's greatest teachers. We all learn from our mistakes and from our failures. I want them to come to realize how much they need God and they won't do that if I keep rescuing them from every situation.

What good would it be if we felt pain each day but never learned from it? And what good would it be if we sailed through life without experiencing the joy that comes after the sorrow?

There can be no growth of character and depth of personality if our lives were perfect. Experience, and everything that comes with that - fear, failure, success, confidence, sorrow, joy - is what builds our heart and deepens our soul. We learn to move beyond our pain and sorrow to grow in areas and directions we would never have imagined.

And we learn to trust God and stand on His word that says, "weeping may last through the night, but joy comes in the morning."

May You Always Have an Angel by Your Side

My sweet Angel Trey,

Mommy found this card/poem while shopping for an anniversary card for Daddy. This poem states all my hearts prayers for you. Please never stop believing, wishing, hoping or dreaming. BELIEVE that miracles happen and that God is Good ~with the entirety of my heart and soul to you, my beautiful baby… always, Mommy

* Your big brother Drake made this ANGEL in the snow just for YOU



May You Always Have an Angel by Your Side



May you always have an angel by your side

Watching out for you in all the things you do

Reminding you to keep believing in brighter days

Finding ways for your wishes and dreams to come true



May you always have love and comfort and courage

Giving you hope that is as certain as the sun

Giving you the strength of serenity as your guide

May you always have an angel by your side



May you always have an angel by your side

Someone there to catch you if you fall

Encouraging your dreams

Inspiring your happiness

Holding your hand, helping you through it all



In all of your days, our lives are always changing

Tears come along as well as smiles

Along the road you travel,

may the miles be a thousand times more lovely than lonely

May they give you gifts that never ever end:

Someone wonderful to love and a dear friend in whom you can confide in



May you have rainbows after every storm

May you have hopes to keep you safe and warm



May you always have an angel by your side



~Douglas Pagels

"New Normal"

In order for me and my family to survive, we too must find a “new normal”…whatever “normal” is anymore. Cami

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 then 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.

Don Piper is the Author of 90 minutes in Heaven

Minnesota in March

Another successful trip to Minnesota , not only were our prayers for Trey’s spine answered, the boys prayers for snow came true too



Our first meeting with Dr. Regelmann, the pulmonologist, went well. Dr. Rengelmann informed us that Trey’s lungs sounded great. The doctor versed us on the fact that he doesn’t run pulmonary function tests until children reach 5 years of age. Annual visits were recommended on the basis that children with MPS conditions have narrow chest cavities thus creating concern with pulmonary function.



Next appointment was across the Mississippi river to Dr. Schwender at the Twin Cities Spine Center and we all know how promising that appointment was…Yeah for Trey! The follow up orders from Dr. Schwender was to obtain full spine x-rays in 6 months unless Trey starts growth hormone, then recheck three months after initiation of growth hormone. The good doc also agreed to continue with physical therapy and again gave no physical restrictions at this time. In regards to growth hormone, Dr. Schwender gave us the thumbs up. He regretfully informed us that Trey would eventually have to have surgery on both hips due to the dysplasia that was already evident and most likely his back, knees and ankles BUT we all know I will try to prove him wrong by trying anything and everything. I believe that what doesn’t hurt him may possible help him, so why not?!



Back across the river to our favorite doctor Whitley. Our visit was true to fashion, very informative with much time spent on Trey’s results as well as continued care in detail. Dr. Whitley had copies made of all the many different test results and once more spent the time to explain each and every one of them. Although we initially had only one meeting scheduled with Dr. Whitley, he made sure to catch up with us another day during our time at the U of M’s hospital to continue what we hadn’t finished at the completion of our first appointment. As we said goodbye, Dr. Whitley asked that if we made future appointments with other doctors at the U of M could we please include him in our schedule?…ya think?! We are so pleased with the care this astonishing man has given our son…he will always be our “go to” guy. Yet again, we were treated like “gold” and given this most excellent doctors time, patience and understanding to our current situation and all the pain and anguish our family has been through these past sixteen months. It was decided that annual visits would be adequate unless something else comes up (we pray it doesn’t) in between times.



The stimulation test for growth hormone was long yet uneventful. We were all excited to get nurse Judi, Trey’s same nurse from our last visit to MN. Nurse Judi is so compassionate and just the sweetest lady to Trey (not to mention her familiar face was probably reassuring to him). The test was four and a half hours long. Aside from the liquid Trey had to take orally, the entire test was administered through Trey’s port and other than the insertion of the needle, it seemed painless. One of the medicines that were used to stimulate Trey’s GH was klondeine which side affect is drowsiness…Trey and Mike slept almost the entire test (I probably could have too if a blood draw wasn’t taken every half hour) J. The test results should be available to us as soon as we return home. Trey’s endocrinologist, Dr. Polgreen was so wonderful to show up to the last hour of Trey’s “stim” test to explain all the advantages and disadvantages of GH for Trey and a child with his condition. I woke Mike up to help me retain each piece of information Dr. Polgreen was providing us with. The meeting was very educational. Dr. Polgreen is such a remarkable doctor, who like our last visit, gave us all the time we needed to feel comfortable enough to make informed decisions with the results of Trey’s test. Dr. Polgreen gave Mike and I hope for Trey’s future should we choose GH...even if it is just centimeters at a time.



So, on top of Trey still being as tired as could be, he also got a hold of a nice head cold from our first wintery days here in Minnesota (or maybe the one his big brother Broc brought along with him from Arizona ). With that said, we attempted a hearing test with audiology on that same day but with no success…Trey couldn’t stay awake. This was perfect timing on Dr. Whitley’s part, he showed up to finish our meeting from the day before. After the meeting with Dr. Whitely we attempted another hearing test. Trey wasn’t interested and as a result his results were less than pleasing.



The meeting with the ENT, Dr. Rimell was next. Dr. Rimell confirmed that Trey had a cold and that along with the cold and the klondeine, it was a bad idea to conduct any type of hearing or ENT evaluation on Trey at this time. Dr. Rimell was not impressed that Trey’s doctors back home hadn’t had Trey’s hearing tested as of yet. Dr. Rimell advised us that we needed to have Trey’s hearing tested back home as soon as Trey’s cold clears. For the past two years I’ve thought that Trey’s speech was delayed. We’ve have had him tested both mentally and verbally in MN (neurology) and in AZ (speech) in the elementary school system. Although both said he was on track, I’ve always thought otherwise…could it be his hearing??? Ever since the first mention of MPS IV, I’ve put two and two together thinking that his speech delay may be due to a slight hearing loss (I read to be aware that this may be a symptom of MPS IV). I hope I’m wrong about my babies hearing but Dr. Rimell said it would be more harmful to Trey the older he get’s if we don’t get this issue resolved immediately…and this (ear tubes) is nothing in the whole scheme of things.



My Auntie flew back to Minnesota with us to help us with the boys during the long days of testing. As luck would have it, a friend of my Aunts came to the hotel to pick up the boys and my Aunt the morning g after we arrived to take them all up to the lake. What a blessing this was for Drake and Broc not to have to sit through long days in the hospital or to be carted back and forth from appointment to appointment. Mike, Trey and I met the boys up at the lake not soon enough. The five of us had such a great time with my Aunt, Grandma, and cousin. The snow we wished for last November when we were here came down in blankets this time. Drake and Broc had such a fun time making snow men, ice fishing, snow boarding, sliding the snow saucer down the hill from my Granny’s house down to the lake, being pulled in a sled behind the four wheeler, making snow caves, finding secret forts in the woods and what ever else young boys can do with miles and miles of snowy land to play in…how many other kids got to play in snow like this during their Spring Break? J Trey wasn’t so sure about all the extra clothing and boots up to his knees but he too had a good time in the snow (I think his favorite part was riding on the front of the ATV with daddy while pressing the gas). Mike would still like to move to the cold if he could but the -25 degree temperatures convinced me that this is just a bit too cold to live in…visit, yes but live in…NO!



We all left with the answers we were looking for along with the same head cold…other than that, another satisfying trip to Minnesota , thank you for all your love and prayers



Love from the snow,

Cami, Mike, Drake, Broc and Trey

{belong to God}

When darkness overtakes the godly, light will come bursting in. They are generous, compassionate, and righteous. Psalm 112:4

When you belong to God, there is no need to be afraid of dark times that may sweep over you. For God is our sun, our light to guide us through to the end.

A quick note from Minnesota

Hi from the snowy Twin City tundra,



A very quick note to let you know that our prayers were answered…Trey’s visit with the pediatric orthopedic spine surgeon produced promising results! Trey’s curvature in his spin went from 62 degrees to 59!!! Although Dr. Schweinder said that there was a 3 percent margin of error in the measurement, Mike and I believe that all the prayers and the hard work Trey put in with his physical therapists (3x’s a week) worked…as of today, no surgery is recommended!



Of course I was sick to my stomach awaiting the results but patients is a virtue



Thank you so, so very much for all the prayers, they are felt



Goodbye for now, I will be sure to download the photos and update in detail soon after we return home.



All our “chilly” love,

Mike, Cami and the boys

“fundraisers”

I have been meaning to do this for some time now. It’s very meaningful to me to make you all aware of the HUGE HEARTS that have gotten us through our first year of diagnosis/misdiagnosis. I wanted to add the “fundraisers” stories and pictures to Trey’s blog to let you all know how extremely indebted we are to all of you who so selflessly gave to and held fundraisers for Trey. I added some them to the blog as they happened but wanted to add every one with the fantastic pictures that we have from each of them to remember those timeless moments.



Please go to Trey’s blog to see all that has transpired since our first fundraiser, the golf tournament, to the children that have given so beautifully…the stories are so inspiring and tender. Although I only have a few posted, I will add one a month as I create the blog entry for each of the events/gestures.



My beautiful friend Alexis has created this entire blog along with updating it for me each and every time I write an entry. Thank you Lex, I love you and couldn’t do this without you



www.ourtreystreasures.blogspot.com







All our gratitude, Cami and the boys

Words that Touch our Hearts!

This touched me Much deeper that the words on the page…



Hi Mike, I hope all is well with you.



I was just on the blog and wanted you and Cami to know I will be praying

Trey – endurance

Doctors – wisdom

You and Cami – you do not grow weary.



Although I have never faced the fight you are enduring I have learned this: If it were easy I would never depend on the Lord.



Grace,

Tom

The William Houser Golf Tournament - May 2008

Stephanie (my sister-in-law to be), along her family and friends bestowed upon us the honor of receiving for Trey the funds raised from the annual golf tournament played in tribute of her father’s memory. The people we met this day will forever hold a place in my heart as they so willingly raised,worked,golfed,and donated all for our baby. The amount of money raised was matched by a local bank and in turn donated to the MPS Society in Trey’s name…all thanks to Linda, Stephanie’s wonderful mom. How fortunate we are to have been blessed by such beautiful people and to have Stephanie, her mother and her brother become our family members as my little brother, Jeff and Stephanie get married this month...Trey is one lucky little guy to have Aunt Steffy in his life

Off to MN with a Diagnosis

Here is the Letter we received with the Diagnosis. Also I have added a copy of our schedule.

Cami and Mike,



I hope you are well, and that things are going well. I have now

received all the test results, and all are confirmatory of Morquio

syndrome type A.



Looking forward to your visit next week: Is everything you want all

set up, or are there any unanswered questions, or things that should

be set up for next week?



Also, I am wondering about Trey's catheter. Has anyone been charging

it with heparin to help ensure it does not become clotted?



'Looking forward to seeing you soon.



Warm regards,



Chet


Monday, March 9th

> 11am Dr. Schwender

> 2pm Dr.

Whitley

>

> Tuesday, March 10th

> 8:30 Masonic Day Center for "stim" testing

> 1:00 Audiology (and if needed as advised by Audiology a 2pm ENT

> appointment)

>

> Stephanie will be calling us back to see if we can get inn with the

> pulmonologist Mon. am or pm, Tues. pm or even Wed. am before we head

> up North.

Hi and Bye

Hi and Bye,



Just a quick update before we leave for Minnesota this Sunday…



Thank you for all your concern in regards to our Oakland trip. Due to circumstances beyond our control, we were not able to have Trey tested as scheduled. We were still awaiting the final two test results from Minnesota days before we were about to leave for Oakland . It was explained to us that there was some “construction” going on at the lab where Trey’s skin fibroblast was being grown and tested. As luck would have it some “dust” entered Trey’s sample and contaminated it. The people from Biomarin expressed their sympathy towards us for all that we have been through and that without the results from the final tests, they felt it was better that we reschedule our visit until all tests are back and we are 100% sure Trey has MPS IV (even without the final two test results, Dr. Whitley was 98% sure of Treys diagnosis). Dr. Whitley so kindly agreed to write the letter below in hopes of persuading Biomarin of Trey’s new diagnosis…to no avail L. Again, everything happens for a reason…we will see about making our visit to Oakland sometime after we return from Minnesota .



Michael Trey LANE has Morquio syndrome type A with 98% certainty.

This is based on:

1.) Elevated urine glycosaminoglycans.

2.) Deficient GALNS enzyme measured in blood in the laboratory of Dr.

George Hoganson, University of Illinois , Chicago .

3.) Oral report of characteristic and specific urine metabolite measured in the lab of Dr. Jerry Thompson.

4.) Lack of MPS VI gene mutation determined at Emory (hearsay from Genetic Counselor in Phoenix ; awaiting written report)



By most standards this should be sufficient, and this all correlates with his clinical condition. Because of past events, we are also ruling out multiple sulfatase deficiency (awaiting results of cultured fibroblasts from two labs), and are doing gene sequencing of the GALNS gene (exons 2-14 went on the sequencer in my lab today).

Warm regards,

Chester B Whitley PhD MD





A few days after we had conceded to not visiting Oakland , the conclusive test results (the email from my last update) came to us from Dr. Whitley…I was not about to “ruffle any feathers” … we will reschedule.



On to Minnesota …we are off again for more tests and more results. As instructed by the MN. doctors last November we are returning to Minnesota to have the curvature of Trey’s spine measured and to meet with Dr. Whitley regarding Trey’s new diagnosis as well as to discuss where we go from here. Out hesitation we have decided that Trey’s team of doctors will now be in Minnesota and from here on out, they will advise us on Trey’s medical care. While in Minnesota in addition to meeting with Dr. Whitley and Dr. Schwender (of the Twin City Spine Center ), we will also meet with an audiologist, an ENT, a pulmonologist and an endocrinologist (to conduct a “stim test” on Trey to determine if he can produce growth hormone). Once again our schedule will be busy but well worth getting the answers to.



Since November’s visit to MN. pertaining to the curvature of Trey’s spine and the possibility of Trey having to have spins surgery if the curve progresses, we have been very proactive. Trey has been going to physical therapy three days a week. Trey’s appointments consist of time in the pool, in the gym and even laser therapy. My prayer is that Trey’s spine x-ray will not only show no progression of the curve but possibly even show that the percentage has decreased…”hey, I will always pray for the best case scenario”. We are all so proud of Trey and all his hard work!



The attached pictures are of Trey at PT. The first picture is of Trey and his favorite person in the world these days, his therapist “Miss Dani”



God Bless,

The Lanes