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.