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.