A prayer request - for Trey, from Trey

Trey was so funny this morning, not only did he request that each of our "special prayers" from the night before be for him and his new hearing aids,this morning he woke up with a huge smile on his face and asked that we bless him again today for his new "hearing earrings"! Trey seems pretty excited about his new "ears"...the anticipation is killing me.

A.A. Milne

*Christmas picture/Dec05...still seeking a diagnosis
"Sometimes, said Pooh, the smallest things take up the most room in your heart"

Clinical Trials in the USA!!!

Well, it's official, the Phase III Clinical Trials for MPS IV is finally here in the US and ready for patients to sign up to participate! We will be heading to Oakland, CA the first week of October for screening, allowing Trey to begin his infusions the following week.

Hearing Earrings

Trey is very anxious for his hearing aides to arrive so the other day he asked, "Mom, when are my hearing earrings gonna get here?"

LOVE that kid!

A visit from Bekah

8/02/11

What a fun afternoon we had this past Tuesday with a visit from Dawn, her son, Gabriel and Bekah. The three of them were visiting from Seattle and were kind enough to make time to spend with us. The kids had a great time eating pizza and swimming until night time came and I had to be the bad guy by having to end our visit because it was 8pm and a school night. For those who don't remember, Bekah also has MPS IV. It was so entertaining to see the two of them relate and equally rewarding to see them get along so well. Dawn is thinking about moving to Arizona and you bet I am excited about Trey having an MPS friend close to his age to experience life with. For now, according to Bekah, Trey is her Prince.

Hooray for First Grade!

July 25, 2011

First grade is off to a great start for Trey. Trey came home from school after the first day and said, "I'm awesome at school, you know why mom?" Of course I had a million reason's why I think Trey is awesome but his was this, "because I never, ever get in trouble!"...ha-ha pretty funny seeing as it was only Day 1!
He loves his teacher, he loves his classmates and he absolutely loves being called a 1st grader! Oh, and how can I forget that he loves that his buddies, Josh, Kian and his new neighborhood friend, Brody whom all ride the bus with him...he is one happy camper!
For Mike and I however, the first couple week's of first grade has proven to be a challenge. After seeing the homework packet and the spelling test included, I began to feel that Trey was not at all prepared for this upcoming school year. My fear was that if he couldn't hear, how could he learn word sounds and read, let alone pass a spelling test? Not to mention Phase III of the clinical trials are here which will remove Trey from one day of class per week and have him coming to school that following day exhausted from travel to and from Oakland, CA the day before (Friday infusions are not an option as of now).
Needless to say I have had numerous conversations with the Special Services teacher at our elementary school, the district audiologist, Trey's teacher (who spoke with Trey's kindergarten teacher), and both ENT and audiologists. Whew! Let me tell you what a stressful week it has been! After all was said and done, it was made clear to me that although Trey does test at the lower end in reading and such, that I am not to worry. Yes, we have out work cut out for us but with the help of the hearing aids (which were ordered at the beginning of this week), over-the-top help coming from Mike and I at home and his spectacular teacher and Special services coordinator, we will work it out. I am not to worry until after Christmas break (if there is anything to even worry about when that time comes). I can't say that I am sleeping any easier but I do know that he is in very good hands. I'm praying that Trey will have his "A-haa" moment soon after the hearing aids go to work!
For now, Trey is happy and we couldn't ask for more than that!Josh, Brody, Trey and Kian... F-R-I-D-A-Y is here!!!

Look Out 1st Grade…here he comes!

July 21, 2011
Trey can not be more excited to begin 1st grade. “Meet the Teacher” night was so thrilling for him, from choosing his seat in the class room to seeing which of his friends were going to be in his new 1st grade class, to finding out who his teacher was going to be...Trey was eager about it all!
Trey and Mrs. Nelson at Meet the Teacher Night
Mike and I are extremely pleased with Treys teacher already and so blessed to know Trey is in the best of hands with her.

Our Sweet Bubba!

Tonight the boys watched another "feel good" story that Mike taped especially for them to learn from. The story was about Butch, a 63 year old man with cerebal palsy that as a 50 year old tradition of Middlebury College, the football and basketball team has fulfilled the tradition by taking Butch to each and every home game. After the story was over Broc says to me that he would love it if he and Drake could start that tradition with Trey when they play college football. As soon as Broc said it he retracted it by saying, "No, forget it because I'm not giving up hope that Trey will grow and play football with us someday."
As if I wasn't chocked up enough from the Connecticut story, Broc hit's me with this tender thought...never give up hope sweet baby!

Cool Dudes!

Teaching Moments

July 16-17, 2011
We had the pleasure of spending time with my cousin, Tina and her family, Troy, Renee and Ryan up at the cabin with us this weekend. Renee and Ryan are Drake and Broc’s age which left Trey out on more than one level; first he’s not as old as they are and secondly because he can’t keep up with them. The kids were headed out for another one of their exploring adventures when I decided that it was their turn to take Trey along with them. All four of the kids complained that they couldn’t go where they wanted to go if they had to take Trey and his stroller. I immediately made them comprehend that Trey has had to sit inside each and every time they left without him and that it was their turn to sit while we take Trey outside to explore. In an instant they all decided against my suggestion and were willing to take Trey along.
Mike and I are realizing more and more that the older Trey gets there are going to many, many occasions where Trey won’t be able to be a part of his brother’s activities. When he was younger, we got away with the fact that he was the baby and it was easy to explain but now that he is older it is affecting him as well as us much more.
Although I suggested that the kids include Trey, once bringing his “loneliness” to their attention, they agreed and were nice about taking turns pushing him up and down the dirt roads on their walk. They are all going to be such compassionate kids! Another teaching moment…thx to Trey!

Happy Birthday Renee'

July 15pm
To our amazement and realization Trey had a wonderful time at Skate Land where we celebrated Renee's birthday party. When we got to the rink we not only noticed some of the younger kids skating with the assistance of a “wheeled walker” but that they also offered a skate in Trey’s size that obviously rolled much slower than the regular skates. I know I sound like a broken record when I say that Trey amazed us once again with his determination and spirit but… he did! I asked Trey if he wanted to skate just to say that I did, never, ever expecting that he would say yes! I was in tears as I witnessed Trey skate with a smile on his face and a twinkle in his eyes as if they were winking to me telling me not to worry.
Every day we learn from this child and today was no exception. We left the house at 9:30 this morning and never thought we would be gone all day up until the hour of Renee’s party. Mike and I had originally planned that I would drop Trey off to him and that he would stay home with him while I take Drake and Broc to the birthday. We figured it wouldn’t be much fun for Trey to sit and watch all the kids skate around him. But because all five of us were at Trey’s hearing appointment and it lasted longer than expected, we all went to the party. It was too late to go home and be then be back to Skate Land in time. God’s plan in action…otherwise we would have never got to witness the joy of Trey on skates and the happiness that filled his heart as he rolled around the rink!
Trey winning the 1000 ticket jackpot…a good time!

Say What?

July 15, 2011
Off to the ENT we go…As we sat in the waiting room I noticed a pair of Oticon hearing aids attached to a display. As luck would have it, the aids detached from the display which gave me the perfect opportunity to introduce them to Trey and possibly even try one on before the audiologist (a stranger)did.
Trey was “game” for touching them, trying them on and even tricking Drake and Broc by asking them to look at his ears to see his new hearing aids. The boys couldn’t see them so Trey lifted up his hair to show them he did indeed have them on.
Trey loves fooling his brothers and thought he was a big shoot when they express wanting a pair because they thought they were cool and that they could hear music louder with them on…go figure?! I’m guessing it’s like when I was younger and had braces, all my friends wanted them too, ha-ha! Anyway, we are off to a good start…
Trey’s appointment with the ENT (who happens to be my cousin Tim) and the audiologist confirmed what we were told in Minnesota. The audiologist wanted to run his own series of hearing tests on Trey to not only verify the test results we received in MN but to also test at a few other ranges to be sure to identify the correct settings for Trey’s hearing aids. Trey was once again a super patient and much more compliant than I ever thought he’d be (but of course!). Even though the audiologist suggested I sit Trey on my lap in the sound booth to administer the hearing test’s, Trey decided against it and was ok with me sitting outside of the booth looking in at him while he tested.
Both the doctor and I were surprised that Trey was good with being in the booth alone and such an independent guy! immediately after the testing, we talked about the results in depth. After that, we examined the numerous options available to us for Trey’s new hearing aids. One of the factors we discussed had to do with Trey’s elementary school and what device, if any, they had in place to optimize Trey’s classroom experience. A mold was made of Trey’s ear to fit the rubber tubing that would be inserted in and around Trey’s inner ear that will connect to the aid. Trey was a perfect little solder and stayed very still for 6 minutes (on each side) as the “play dough” hardened and set. Next we picked the color of the back portion of the aid (the part that wraps around the back of Trey’s ear). The audiologist suggested a darker color than Trey’s actual hair color due to the fact that it sits in the shadow of his ear and will be less noticeable. I agreed with the darker color along with the fact that I believe Trey’s hair will keep getting darker with age and will eventually be just a dark as his aid.
Tim suggested that in addition to the hearing aids, we also have the tube in Trey’s left ear replaced. I was hoping that Trey wouldn’t have to have the tubes as well as the aids but sounds like that is not the case. I will make an appointment with Dr. Fucci to bring him up to date on Trey’s issues and talk about the non-functioning tube in Trey’s left ear.
As soon as I get a hold of the elementary school we can decide on the best options for Trey’s aids. The doctor will immediately order the aids because as we are told, it will take three weeks to receive them at which time we will return to learn all about how to operate and take care of Trey’s new “door’s to the world”.
I am even more excited than I was before going into this appointment because not only am I anxious for Trey to hear 100% of everything going on around him, he too is excited about this new experience.

Now for the Fun!

Day 6 and on/MN

Where do I start with telling about all the fun Trey had at his great grandma’s house on Sugar Lake these past four days??? I will begin with our first stop, White Castle hamburgers…of course. Camryn and Trey weren’t as into the “famous” burgers as the rest of us although they were very happy with their plain burger, french fries dipped in Ranch and their extra-large pops!
The drive up to the lake from the city takes about 2 ½ hours and did not at all agree with Trey’s back. We were so lucky that he woke up so early this morning because as soon as he began to complain about his back hurting, he fell asleep and then again when he woke up to cry about the pain…down he went. I always thank God for those moments because even though I know that we can’t take him out of his car seat (to ease the pain) there are so many times that I want to. This was one of those “thank God” moments because I didn’t have to fight with myself or feel the heartache that comes with hearing his pain. Nighty, night my sweet angel, when you wake up from your nap you will be with your brothers again and so much happier than when you fell asleep.
When we reached Granny’s there was a care package awaiting Trey’s arrival, sent by Auntie Claus (Cathy) and Uncle B. The boys received so much cool stuff along with a goodie or two for Mike and I as well. What would we do without Cathy and Bryan??? Always sending so much love our way!
Again, Mike and I were so happy we chose to have Trey’s knee surgery earlier in the month, especially when we saw how happy he was to swim in the lake. As soon as Auntie Sharron and Uncle Cliff heard Trey would be in MN for his knee surgery, they made sure he had enough tubes and rafts to play in so as not to get his knees wet. We are so appreciative for their thoughtfulness but are happy to say that Trey was much better-off having his surgery behind him and able to get wet!
Appointment after appointment with not much in the way of exercise, being in the water and playing as hard as he did today, made for one tired baby! What better way to nap…in a boat, on a lake.
I am so bummed to say that I missed seeing Trey catch his first fish of the vacation. Either way, everyone else saw it and Trey was as happy as could be on the dock with his dad and brothers fishing.
Mr. Bruce was his generous self once again and took all the kids out on his speed boat. Trey loves being Bruce’s co-captain as much as Bruce loves having Trey by his side. On his own, Trey asked if I had some paper and markers to make Mr. Bruce a thank you card for letting him “play on his boat”. Trey was excited to give Bruce his picture and more than cooperative to have his picture taken with Mr. Bruce and his art work.
My cousin, Mike let Trey drive Granny’s pontoon and even gave him his “cool Guy” glasses to help with the glare from the water. Trey relished in the moment when Mike let go of the wheel than sat behind him to let him take total control of the boat. Happy 4th of July buddy…once again, the fireworks over the water were spectacular and so much more fun than sitting in a hot parking lot in the desert watching em’.
Trey remembered his friend, Dillon from last year’s trip and asked Auntie Sharron if he could come and play again this year.
The boys had a blast playing in the sand, with Trey’s I-pod, on boat rides and enjoying the shallow waters at Kellers Beach. Trey was cracking up at Auntie and I as we pulled Trey on his kick board-going fast and making hard right turns. It was so cute how Trey kept trying to talk Dillon into riding on the kick board saying it was fun and not to be scared…like he’s the big guy here.
Day after day Mike and I are witness to the sad truth that most kids get bored playing with Trey soon after they start because he can’t keep up with them and Dillon was no exception. My heart aches for Trey but when I see him so happy and not taking the “rejection” to heart it, makes me smile.
Take today for instance, all the boys were chasing each other, filling water buckets and pouring them over one another’s heads…things Trey couldn’t possibly keep up or be tall enough to participate in even if he wanted to. I sat behind Trey and watched as he watched all the boys play and noticed he was giggling at how funny they were being.
Here I was feeling sorry for Treys’ handicap and there he was sitting on the step, enjoying the show. Another teaching moment for mommy!
Before we left, we made sure to have the boys get a picture with Granny. My grandma just loves having company at her home, especially the kids! She was very sad to see us go but we left her with the thought that we would see her again in November in Arizona.
At 91 years old, we cherish each moment we are able to spend with Granny and truly look forward to the next time.

Day #5-MN

July 1, 2011

Early this morning I got a call from Steve saying that he and Camryn would be in at 7:30. I tried my best to get ready quietly, go pick them up from the airport then be back in time to surprise Trey as he awoke. Mike and I call Trey a heat sinking missile when it comes to me and sure enough today was no exception. At about 6:30am, Trey was bright eyed and bushy tailed. We both got ready, let Mike sleep then headed to the airport. Of course Trey wanted to wear his Golden Gopher jersey and spray paint his hair maroon to match. Somehow Steve got the arrival time wrong by an hour so Trey was very anxious as we waited for the call from Steve. As we circled the airport, out of the blue Trey asked about daddy’s friend Mr. Dan. He said, “you know my police friend that tried to save the cat and fell in the fire roof? I hope he’s ok mom”. I am always impressed with Trey’s memory, add the compassion too…what a special kid! After dodging the airport security for stopping for too long and too many times, finally we get a call from Steve saying that they had landed. Needless to say, Trey was super excited to see his Uncle Steve and cousin Camryn.
Now he has his cousin here with him to coach him through today’s appointments and keep him company on the long drive up to the lake this afternoon.
Steve stayed at the hotel while Mike, Camryn, Trey and I headed to the University for our first visit. Camryn was very helpful with Trey from pushing the stroller, playing I-pod games together, and sure enough she coached him through his first test of the day; pulmonary function test.
I’m not sure that we got a good enough reading or not, but I can tell we are getting closer.
Appointment #1 of the day was with Dr. Regelmann (peds pulmonology and infectious diseases). The first comment the doctor made was about Trey’s cool hair…but of course! We began the appointment with talking about the results of the overnight sleep study that Trey took earlier in the year. I was beyond pleased to tell Dr. Regelmann that Trey passed this test will flying colors; no sleep apnea, receives sufficient oxygen, and reports of an unobstructed airway and uninterrupted sleep=nothing to worry about in this arena! The doctor reminded me that the reason for such studies in MPS children is due to the thickening of the airway tissue and that whenever a child snores, they will start with this study to rule out the sleep apnea and be sure that the child is receiving sufficient oxygen levels during their sleep periods to know that their brain is not being adversely affected.
Next he performed a thorough check up on Trey then began to ask specific questions about Trey’s daily activities. He questioned us about heavy breathing, shortness of breath, wheezing, etc. We informed the doctor that Trey had none of those issues, only those related to his severe orthotic concerns.
Dr. Regelmann was informative about the upcoming ERT (enzyme replacement therapy), Phase III. He told us that the reports from Phase I and II looked good and conveyed that the patients in the study were displaying chest growth and expansion of the chest wall. Mike and I have noticed a severe change in Trey’s chest plate and extreme protrusion that has formed over the last few years and have been tremendously concerned about his lung capacity because of it. To hear that the treatment that is on its way is working to improve this area of concern brought me to tears. He repeated what we already knew and what doctor after doctor have told us about MPS IV affecting the childs growth plates and cartilage. He was encouraging in that he felt that the ERT would help decrease the GAG that is suffocating these areas. We asked a few questions we had about the ERT then began to talk about the PFT results. Trey’s O2 saturation was normal meaning that his lungs were doing their job by carrying the oxygen to the blood and that his flow rates (amount of air in/out) was proportionate to his size, with no obstructions and that things seem to be in balance…always a good sign. Trey didn’t pass the actual PFT because he wasn’t able to blow out for a long enough period of time without taking a breath in. Dr. Regelmann said that only 50% of all kids Treys’ age can execute this test well enough to get a good reading. We will try again next year if not in Oakland in a few months. Dr. Regelmann asked about us having chest x-rays done on Trey, to which we haven’t. He asked that we schedule one for next year and also would like to take some blood to test the carbon dioxide in Trey’s blood. He told us there was no indication that Trey’s results would be anything but normal but that it is hard to know without a test. He did inform us that Trey’s lungs are filling well in his thorax but that his ribs aren’t growing as fast as his lungs and for that there is reason for concern. We ended feeling as good as we could about what we could know from what the doctor had to go on but we’re a bit anxious about the “what if” as Trey gets older without any bone growth. We will cross that bridge when we come to it and keep praying for the best for our youngest son.

Next and last meeting of the day (and week for that matter) was with Dr. Whitley. Dr. Whitley loved, loved, loved Trey’s hair and was happy to get a picture with him with the matching hair and Uof M jersey.
With Dr. Whitley we went over every appointment and every test result from the week and summed up each doctors feeling of such. We talked about the upcoming ERT and again what he had heard in relation to when, where and how. Dr. Whitley was very pleased to see Trey and to hear all the good news from our long week. He too recommended that if possible, Trey take part in Phase III of the ERT clinical trials. Dr. Whitley also recommended that Trey get a yearly MRI to measure the compression in Trey’s neck. He told us that we would not want to see loose or jostling nerves within Trey’s neck (atlas/axis area). His explained that we should be concerned with banging back and forth of such area (rocking=good/jiggling or sliding=bad). He told us to watch for Trey becoming very tired for no reason or for sudden numbness as opposed to him complaining about pain in the area as an indication of compression. The doctor also checked for clonus on Trey. He again explained that this is the brains signal to control the arms and legs. This reflex test tell the doctor if he feels Trey is developing clonus which would indicate a problem/pinching/compression in the nerves that run through the neck. We felt good about our final meeting and have to admit that we as well as Trey were “cooked”. As much as I would have liked (and felt privileged) to bounce medical questions off the renowned doctor in the MPS field, after all the good news I didn’t feel up to hearing about the future and all the frightening symptoms related to this aggressive disorder. We spent all the time we needed and asked all the questions we could handle at this point in our week.
I thank God for the week we had and honestly could not have asked for much better given MPS is a progressive disease. Because of the nature of MPS, we never go into this week expecting to hear anything but “stable” or “worse”…at least until a treatment or cure is found.

Day #4-MN

June 30, 2011

We never have gotten adjusted to the time change –last night at 1:30am as I was writing Trey’s blog I noticed a movement out of my left eye…a mouse ran across the floor and into the kitchen area of our hotel room! Trey and Mike were also awake and heard me voice my concern (ha-ha, a nice way to put that I screamed). Needless to say at 2:30am we were changing rooms…good thing our first appointment wasn’t until 10am today.

The very first thing Trey requested of me when he work up this morning was to please give him the same hairdo that he had yesterday (he must have liked all the compliments) and even asked if we could find some purple hair color (like the Vikings) to go with the “do”…nice! My mom brought up a great point about Trey’s new longer hair style. She said he may want to keep it because it may hide his hearing aids. Trey is very concerned with being cool like his big brother’s and may agree with grandma on this point.

So thrilled to report more good news!!! The prayers were heard and answered because not only did the curvature of Trey’s spine stabilize, it got better!

Measurements of the curvature of Trey’s spine:
6/21/10 - 49 degree curve
6/30/11 - 41 degree curve
An 8 degree decrease in the curvature and an overall change of about 20% all for the better...God is Good! Thank you so much for keeping us in your prayers, for following Trey’s journey and for sharing in the joys of the good times with us.
Dr. Schwender (pediatric orthopedic spine surgeon) said that unless Trey’s spine reached a 70 degree curve or more we would not have to talk surgery. He said that since Trey’s spine has stabilized there is a low likelihood that this issue would have to be addressed until Trey enters his teen years. However, he does want to continue our yearly visits.
Again I asked Dr. Schwender if he believed that the benefits we are realizing with Trey’s spine had anything to do with the physical therapy that we are so religious about attending to. Dr. Schwender said that if it was his child he’d be doing PT like crazy but that he has to be objective and tells us that there are still no findings related to PT and MPS disorders. We all looked at one another with smiles on our faces and I tell the doctor that Trey will prove it!

We arrived at our next appointment a little early which gave Mike and I some time to talk about the blessings we had just witnessed with Trey’s spine. Trey pipes up from the back seat that Mr. Mike had his baby and that he wanted to call him. I dialed his physical therapy office and sure enough, Mr. Mike’s baby was born late, late Monday night. I told Trey to tell them Trey called for Mr. Mike and he hung up. I looked at him in the back seat and with a huge smile he said, “ Yeah, Mr. Mikes baby was born but he is only zero years old”

Dr. Pulgreen (ped. Endrocronologist) was our next appointment. Mike and I wanted to talk about the growth hormone shots that Trey underwent for 16months. Dr. Polgreen had so many charts on Trey for us to look at, told us about all the results from other MPS patients on growth hormone and she too talked to us about what has been discussed in relation to MPS at the LSD (lysosomal storage disorders) convention. We talked about the upcoming ERT and what we had on our mind in regards to introducing IGF into Trey’s system to see if he could achieve growth. We had a very productive conversation and came to the conclusion that we would wait on this new option until after ERT has begun. We all agreed that Trey is only 6 years old and that he has many more years that his growth plates will remain open. With that, Dr. Polgreen expressed to us that there is also an option to extend the amount of time Trey’s growth plates can stay open. Introducing IGF into Trey’s system is exciting and scary to all of us; #1 this has never been given to an MPS patient and #2 IGF bypasses the liver (an organ we believe Trey has issues with) so maybe we will see results…exciting. Either way, we are going to wait but to have this open discussion with all the information,data,charts, risks, benefits, etc. was very informative and necessary for Mike and I to make an educated decision for when and if that time comes. Again, the idea that there may be a chance (no matter how small it may be) for Trey to grow gives me something to hold onto, along with ERT, another option at a better quality of life for Trey.
I think for Trey this was a great appointment as well because he didn’t have to get a shot (blood draw).
I told Dr. Polgreen about our discussion with Dr. Schwender and the PT variable and without hesitation she agreed that physical therapy is good…she said, “do it!” As far as there being no documented results on this issue, Dr. Polgreen advised us to have our therapist write up her findings. How I would love for Trey’s success to be the first recorded and even added to “the books”. This could bring the USA up to date in the field of options to be given for newly diagnosed MPS patients. All other countries recommend pt and from what we’ve read, it is covered by insurance as well . Here in the US, nothing we do for Trey that we have chosen to provide to him is covered by our insurance, from water therapy to physical therapy to massage therapy. I remember sitting in the doctor’s office when Trey was originally diagnosed, remember being told there was nothing that we could do for Trey to help him, feeling entirely helpless. To give parents something to grasp, for them to feel like they can provide help instead of feeling helpless could give them hope. When you give a parent something concrete like these results, they can’t help but to feel encouraged instead of defeated from hearing the words “life threatening” in relation to their child…give me something, anything to hold to, to pray for, to undertake, to take my mind off those life changing words.

After today’s appointments, we headed to Mall of America to see the sharks at the Sea Life Exhibit. Trey really enjoyed the exhibit. We also took him behind the scenes where he got to meet Sharky, tour the fishes kitchen, hospital and view the tanks from above…fun for any child! Oh, and as an added bonus, we found and bought Trey his very own UofM jersey(he'll be wearing that tomorrow for Dr. Whitley).

At dinner Trey decided he was going to be the Karate Kid right there at our table. I looked at him and laughed and he told me not laugh because the karate kid is very serious-he must know something about the art of this ancient Japanese sport that I obviously need to study up on.
When we got back to the hotel room first thing we did was to spray Trey’s hair purple. I just know his brothers are going to think Trey is very cool after they see him looking like this!

Tomorrow we have three more appointments then head up to the lake…I won’t be able to post but will make every effort to post when we return home and I have internet access again. I think Trey, Mike and I will really like the remoteness of the next few days…we actually had 13 appointments/tests in four days and are awfully ready for the holiday with family.

Day #3-MN

June 29, 2011
Today started out with a lot of fun and anticipation. Trey probably asked me 10 times what time it was, he was so excited to take the tour of the Metrodome before our day of doctors and tests started.
The tour was very interesting for Mike and I with all the facts that were given about the teams that have played in the dome along with the detail and video of the September 12, 2010 roof collapse. Trey had a tough time trying to figure out how that huge space of plywood and construction trucks could possibly be the Vikings football field. Ok so… what an old stadium.
It’s hard to imagine anything less than the Uof Phoenix Stadium where the Cardinals play in this day and age. Still, cool to see none the less. Trey was given a keepsake piece of the original dome/ roof and a Minnesota pin. We are very happy our hotel was so close to the field and to be here on a day when the tours were given.
Our first test of the day was a very successful audiology test in which Trey promised to do his best. Trey wanted Mike to go in the testing booth with him and even Mike agreed that Trey was very cooperative and followed all instructions given. Up until today we have yet to get an audiology test that any tech. thought Trey participated in enough to consider “usable” data.
During our first doctor appointment, we were told that Trey had a “mixed hearing” loss in both ears. His inner ear (sensory neural) is where his greatest loss was although he also has conductive (bone) hearing lossl which is why we were told he had a “mixed loss”. Trey is in the mild-moderate range of loss in which the doctor projected 30-50% of what Trey hears is garbled. Dr. Rimell (ped’s otolaryngology) informed us that both of Treys tubes are in place, that the one in his left ear was not functioning correctly but even still, both ears tested in the below average range. After a lot of questioning and giving situational examples to Dr. Rimell, the doctor recommended hearing aids and wrote us a prescription for a set. We were warned that hearing aids are not cheap and can run $1,500 per ear (not pair but ear). He advised us to do a lot of researching and even explained that although Trey really only has to wear them for school, he will most likely want to wear them 24/7. And lastly, Dr. Rimell told us that most children with this amount of loss do not do well in school and are even known to fail a grade. With that, he said to expect Trey to do much,much better in school and to anticipate one happy child when he realizes the benefit of hearing 100% of his surroundings.
Funny side note-Trey asked me to help him style his hair in a faux-hawk today. The funny part is he has gotten so many comments about how cool of a hairdo he has…he is eating this up!
A huge thank you to Auntie Missy and Mr. Brad for picking up the boys’ suitcase this morning. As luck would have it Missy and Brad are in town visiting Brad’s family and are headed to his parent’s cabin up North, 12 miles from Granny’s house. Now Drake and Broc don’t have to live in the one outfit they had with them (although I’m sure they will live in their bathing suits once they get their suitcase anyway). By the way, Uncle Steve and Camryn are still stuck in Phoenix and will never fly standby again on a holiday week…glad I didn’t choose to wait for them to bring the boys’ their clothes.
Echo-As soon as Trey saw that he was getting an Echocardiogram he says, “Is this the jelly?, I like this!” I could have sworn that he said the exact same thing last year. And how adorable is this? As we were listening to the beat of his heart Trey looks at me with the sweetest smile and asks if I hear his heart when all of the sudden the sound stops and Trey immediately looks up to me and says, “Mom, did he stop it?” with a smile I respond with, “No, Trey he just turned off the sound”. Trey and I exchange a look that I wish I could freeze in time…his innocence is so special. And being silly as Trey like to be, he asks if he could have his jelly (the gel they use on your skin when doing echo’s and ultrasounds) cold. The gentleman tells Trey to come back in the winter and he’ll be sure to get him cold jelly.

As my stomach is in complete knots awaiting the results from the Echo and anticipating the EKG, I get a text from my bestest friend saying that she is “holding my hand”…what perfect timing for such loving words.

The EKG is done and Trey requests that I do not take off the conductor sticky pads and will only allow nurse Connie because she has an orange smelling oil that is nicer than mommy using nothing and just ripping them off.

The results are in and Dr. Braunlin (peds cardiologist) gives us lots of good news;
-The function of Trey’s heart is normal
-His ejection fraction is 70% (anything above 50% is normal) and word for word “the best I’ve seen all day”-that includes non- MPS patients
-Lung pressure is normal
-Valves are normal
-No leaking
-No narrowing
Of course after hearing that Trey’s heart valves are “normal” Mike and I both question Dr. Braunlin. Last year in our face to face appointment following the EKG and Echo Dr. Braunlin reported that Trey had an “A+ organ” but when we returned home to read the interpretation of the tests, it said that Trey had mild thickening of his heart valves. I was a mess for a long, long time. Mike and I didn’t have the luxury of asking all the questions that came to mind (standing by ourselves with the letter in hand) as we would have had this news been told to us at our MN appointment. Because I didn’t know or understand exactly what this news meant for Trey, my mind began to think the worse…human nature. So this time you bet we had questions. Dr. Braunlin explained that reading the tests are subjective, that Trey’s readings look really good and that the tech said had he not known that Trey had MPS, he would never, ever know better by the looks of Trey’s heart. She said that once they know the patient has MPS they question, “normal, not normal, normal, not normal.” With that, Dr. Braunlin told us there was no need to schedule yearly appointments with her and that we would see her in two years!
With tears in my eyes, I hug Mike and then Trey and tell him I am so happy and he says he is so happy at me for saying that-doesn’t get better than that!
Dr. Braunlin talks to us about what she had learned about MPS in relation to Enzyme Replacement Therapy (ERT) and even showed us a medical article stating (with pictures) the astonishing benefits. She asked Mike and I if we had an MRI scheduled and said that the doctors are now recommending that an annual MRI be given to MPS patients to check the laxity of the head and neck…mental note to subtract the EKG and Echo and to add the MRI for next year.
Talking about the ERT for MPS IV, Dr. Braunlin asks again how Trey was misdiagnosed. As painful as it is relive, we know how important it is to let all doctors know so that just maybe we can prevent others from going through what Trey went through. Our story rings a bell…Dr. Braunliln says that Trey’s story has made a huge contribution to the protocol of diagnosing MPS disorders. That because of Trey’s misfortune, now when a child is diagnosed with an MPS disorder, the doctors are not to stop at that, they are to test for every MPS disorder to make certain they have the correct one. We leave with the ability to breathe normal…thank God for good news!

We were finished with the tests and appointments and it was still light out (doesn’t get dark until 8pm) so we decided to drive by the new University of Minnesota Golden Gophers Football Stadium. Trey refers to the Uof M as “his team”. He feels a connection to the team seeing the “Uof M” logo for years (after so many visits to his doctors here at the U) and had a huge interest in this field because he has watched it be built each time we visited. We parked in the stadium lot and walked the entire perimeter hoping it would be open or that we could get a good view of the field or even be able to take note of when they gave tours…maybe we’d be lucky enough to be in town and not have a doctor appointment when the tours were given. Mike mentioned that he had wished that we would run into an old man that would see us and Trey and let us in for a peek of the field.
No luck, but we did get a few pictures and as I could only imagine, Trey got to see the field up, top of Mike’s hands (pushing him as high as he could go for the best view).
We walked around the campus and then to our favorite sub place “Big 10” on Campus”. We were told that there was a portion of the football stadium that is always open to the public known as the “Hall of Fame” but that is may close earlier in the day. On our walk back to the car, we decided to see if we could find the “Hall of Fame” and if nothing else take note of the hours of operation…again, no luck. As we were headed back to the car I notice a man with a walkie- talkie and a lot of keys and asked him if he was the security guard and about this “Hall of Fame” area. Mike begins to tell him about Trey’s “connection” to the Uof M and wouldn’t ya know J.B. moved to Minnesota from California for his son’s heart condition and the reputation of the cardiologists at the Uof M. J.B. asked if we would like to tour the field, the coaches’ lounge and the players locker room? Are you kidding??? This is just (well almost) what Mike had wished for… things that only happen in the movies. Now that is a field!!!
And talk about player locker rooms…an amazing recruitment tool indeed…impressive to say the least! To top it off, J.B give’s Trey a Nerf Viking football of which he was tremendously happy to accept.

A long day, a fun day, a day filled with lots to take in but not too much for us to handle. Two days down, two days to go. Tomorrow is another nail biting day with a visit to the spine doctor…please keep Trey in your prayers for a straight spine, a straight spine, a straight spine.