Wednesday, June 17, 2009

A Whole New World


June 16th, 2009

Trey’s Myringotomy surgery (tubes in ears) was early, early this morning and I am so happy to report that he performed like a CHAMP! Drake spent the night at his friends home so we only had Broc and Trey to contend with in this early morning hour. To our relief both boys woke up in great moods. Trey was on the verge of tears when he noticed that Broc was eating and was told he couldn’t have anything to eat until after his surgery. But true to form, Trey was a very cooperative little guy and waited to eat – Whew, that could have gotten ugly ~ thank God Trey is such an obliging child.

We almost ran into another hitch when the anesthesiologist noticed that in the section marked “other items of concern” was something very foreign to her – it read MPS IV, she excused herself and came back with the head medical director to ask a few more questions of us and to voice their concern. We are very lucky that Trey’s EKG and echocardiogram have all been normal, that Trey has done well under anesthesia and that we were convincing enough to ease their apprehension, otherwise I don’t think we would have been able to continue as planed and been sent home to reschedule at an actual hospital instead of in a “surgery center”. Mike and I were extremely worried of having Trey put under, this only made matters worse.

It’s so hard to be afflicted with such a very rare disorder that almost 100% (here in Arizona) of the time even people in the medical field don’t have a clue what Trey’s disorder is and we have to go into a complete dissertation every single time…it’s always such a painful reminder of how little is known about MPS and how much this all stinks!

Trey’s surgery was uneventful. Our day was just as the doctor had warned us it would be, Trey would be a bit crabby and tired. I wish we would have know to bring some Tylenol because as soon as he woke up he complained of his ears hurting. At home we gave him medicine and soon he stopped telling us his ear’s hurt. When we ‘tested’ his hearing Mike and I both noticed a difference – yahoo! Throughout the day Trey would complain of his ears hurting, once I gave him his prescription ear drops and once before I got around to giving him his Tylenol, he fell asleep. I am so happy to have finally gotten this done for Trey and am looking forward to the benefits this will make in all of our lives.

We love you our little trooper and hope you have begun to hear the difference of a whole new world

Monday, June 15, 2009

Happy Anniversary to WHO?


June 13. Today was my in-laws 45th Anniversary and we were lucky enough to get to spend a good part of their day with them. After attending Drake and Broc’s first swim meet of the summer, my dad and gigi took the boys to see the movie “Up”, which permitted Mike and I time to take John and Joyce out to brunch for their Anniversary. At brunch we were presented with a card for Trey and a gift for myself. For a moment I thought my in-laws had confused the occasion. John explained that their solution to anniversary gifting would be to gift their money to us for Trey’s medical account, something they had agreed on from the get go. Also, they both know how much I lean on the one word “BELIEVE” hence, gave to me a Celtic cross with the word BELIEVE etched across the front. I was moved to tears and so appreciative of their selfless gesture. I am so thankful for in-laws like them; the boys are so extremely lucky to have such wonderful grandparents…together we are all so blessed to be cared for and loved by such an incredible family.

Sunday, June 14, 2009

This Little Light of MINE!!!



VBS ( Vacation Bible School ) is over~ the boys already can’t wait for next year. The three of them had such a great time at VBS this past week as well as their singing performance Friday night, followed by the carnival that evening. Trey absolutely loves the new songs he learned, especially the one where the light’s go out, he get’s to turn on his little hand held candle light and sing, “This Little Light of Mine”. I walked in on him singing this song, saw it light up his face and reflected on how he is my little light and I’m gonna’ let him shine!



Ta-Da...I DID IT!


If it could only last…Trey is doing so well these days that today he even went to the restroom all by himself! Being that Trey is only 3 feet tall (on a good day) he can’t reach the toilet, but today he decided he was going to do it all by himself, stand on his tippy-tippy toes and ‘shoot for the moon’…”I DID IT!” was what Drake, Broc and I heard aloud. The three of us came running and the older two decided that this was a ‘photo op’ and to add it to Trey’s blog. Now that Drake and Broc are big readers, they keep up on Trey’s blog and tell me what to add and also what picture to capture. Not exactly the photo I would have taken but I love that they love to be a part of this

Tuesday, June 9, 2009

"Schools Out For SUMMER!"


It is so crazy to think that Broc will be in 2nd grade and Drake in 3rd and that at this same age in my life is when my most vivid memories began. Trey loved his intersession preschool class and got a kick out of being assigned homework, just like his Draker and Brocer. After just 11 classes Trey learned how to spell and almost write his name – he keeps saying and writing, T R Y… I think it’s a sign, you go boy! We took the three boys for ice cream with permission to order whatever their hearts desired as a way to celebrate their ‘graduating’ into the next grade...check out “Mr. Busy” in that photo-haha!



Trey is in the process of testing for a preschool program offered through the state known as “priority preschool”. Along with tuition and transportation that the state will provide should Trey be accepted, most importantly we are told that priority preschool will focus on Trey’s speech delay and if I can get my point across well enough even his motor skills…who knows, maybe through this screening process, the state will recognize that Trey NEEDS physical therapy and begin to help us pay for those appointments as well. Trey “failed” his first screening in the process ~ this is a good thing and continues us on to the next phase which will consist of a full assessment. I have to say that it all felt so “mechanical”, but to me, it was anything but. We should be called back sometime in July for the next testing process and know immediately afterward if Trey will be accepted into this program.



Along with the help for Trey’s speech should he get into priority preschool, surgery to have tubes inserted into both ears has been scheduled for June 16th. I believe that this will make a world of difference in his speech and feel so bad that we didn’t catch it earlier. The fact that Trey never had ear infections steered us clear from ever focusing on his ears. We pray that this surgery will be the answer.



Trey’s 4 year appointment with his pediatrician was very emotional for me. Trey had to endure four shots and mommy’s heart had to swallow the news that Trey is now in the -3% for height. Trey was such a trooper for this appointment and preformed like a pro (probably because he’s been to far more doctor’s appointments than the average four year old), he knew exactly what to do at every command and once again proved to be the Perfect Patient!




Believe it or not, help came knocking on our door (or should I say in our phone line). A company by the name of Genentech-Access to Care Foundation was referred to us after the second denial of growth hormone through our insurance company. Genentech informed us that Trey medically qualified and were calling to see if he might financially qualify as well for GH. Should we meet the criteria, the GH would be offered to us free of charge until our appeal was settled. To our surprise, we qualified for assistance and our first shipment as well as our first lesson on administering the medicine will take place within the next month. Honestly, I don’t know how I feel. I am anxious and extremely nervous. I am also thrilled at the notion that this may work for Trey and of course have all the hope in the world that it would work but the medical world makes me second guess what my heart wants to believe. With the start of growth hormone also begins the stringent every 3rd month appointment with the pediatric orthopedic to keep a close eye on the curvature of Treys spine.

Physical therapy has been going so well for Trey. Before PT Trey would push his hand on his thigh to be able to walk up the front step to our home or take hold of the flower pot for assistance, he now accomplishes such a feat all by himself. Trey has gained abdominal muscles, which I’m positive has helped strengthen his spine. Proof of this is that the red mark that is evident on his lower back (due to his Kyphosis) every time I remove him from his car seat is much smaller and not so red and painful looking~ either he is sitting up straighter due to his newly developed abdominal muscles or his spine is straightening. Also, Trey can now sit “cris-cross-apple sauce” like his classmates, something that when attempted before PT would cause Trey to fall backward when he tried. The first time I saw my baby sit in this position with a ‘big boy back”, all by himself, I cried…the things we take for granted with a healthy child are such huge milestones with Trey. My mom has advised me to focus on what Trey CAN do instead of on what he can’t.



How do we begin to thank everyone who has been involved with raising money for Trey’s medical fund??? Without all of your aid, we could no where begin to afford what our insurance doesn’t cover like the physical therapy 2-3x’s per week, as well as being able to take part in the Anat Baniel Method and even swim lessons that so obviously help Trey. Without the assistance of Trey’s medical fund we would most likely only be able to choose one of these therapies and only once a week… therapies that are so clearly advancing Trey’s motor skills and in my opinion keeping some of the symptoms of this tragic disorder at bay. Yes, he is one busy boy each and every week, but it’s so worth every minute~ especially since we truly believe we are seeing results! Not only has this fund provided for us the means to travel back and forth to Minnesota to find a correct diagnosis for our baby, it has also opened doors for Trey that financially, we would never be able to justify and has allowed us to do more than just ‘sit and wait’ for a treatment or a cure. For all these reasons and more, we THANK YOU!



I will never understand why and will forever ask the question but what I do know is that Trey’s misdiagnosis brought us to people of whom I would have never met and who now are keeping me “afloat” …I don’t know what kind of mental state of mind I would be in without these remarkable people who understand my every care and concern…all of who were introduced to me because of Trey’s misdiagnosis of MPS VI. I read their blogs and how the ERT is working for their children and I weep in pain at the thought that this could have been my babies story too. In the same breath I hold out hope that the ERT for Trey that is in the process of clinical trials in Europe is working and that someday soon, Trey will be back on track. It is the most agonizing pain to have both hands tied behind your back and just wait for the news. I thank God for this support group, for the hope they give me as well as helping me to hold on to the promise of what lies ahead for Trey

“It’s the thirsty person who seeks water”

“The more trouble we are in, the more God is able to grow us”

“The desert is God’s testing grounds of our faith”

“As absurd as it sounds, we should thank God for the desert days, for being in the desert makes us appreciate what we may have missed before”

Desperate in the Desert (Psalm 63) - last Sunday’s service. This entire service hit so close to home for Mike and I. As we sat through the service we squeezed hands a bit tighter, feeling like the pastor was talking directly to us. We were meant to be there as I believe we are meant to be where we are with our children. For this I thank Him for helping us dig a bit deeper, for making us appreciate the little things and for now knowing the difference between pain and pain ~ the things that use to trouble me now don’t begin to hold a candle to the sting we endure daily

One day at a time…The Lanes

My Brother My HERO


At breakfast this morning I caught Broc and Trey praying. Broc led the prayer by saying, “Thank you God for letting us have a little brother who never is afraid when he get’s shots and stuff” I’m beginning to think that Trey is Drake and Broc’s HERO, funny how that works.

Monday, June 8, 2009

MAKING A DIFFERENCE


This past Sunday in Peoria , Trey, Mike and I attended a free children’s clinic for children with special needs using the Anat Baniel Method. This method is a non-medical based approach that uses gentle touch and movement to enable the child with special needs to improve physically. It asks children to move only in ways which are within their true capabilities, creating a feeling of safety, encouraging a willingness to expand into new abilities. This clinic as well as the sessions we have already had with Mr. Mike, (a certified practitioner in the East valley and a personal friend of Mike’s sister, Cathy), we believe will help Trey develop beyond his limitations. It has been recorded that infant’s and children’s progress often surpass medical expectations. Sunday, Mike and I experienced first hand “Mrs. Michelle” help Trey with his movement, balance, grasp, spine strength and even an increased awareness of his motions (not to mention how Trey slept like a baby after his lesson). Again, what doesn’t hurt him... Mike and I have so much hope for Trey and this method. Both Mr. Mike and Mrs. Michelle have children with special needs which drew them to this work and are extremely compassionate people…thank you both for your caring ways These trained and certified practitioners of the Anat Baniel Method are offering another free clinic in the East valley this August which we have already reserved an appointment.