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
