DAY 1 MN

AMAZING…that’s the one word that comes to mind when I think of Dr. Whitley! I’m so extremely tired but I want to write to ya’ll before I forget the details of today (or at least an outline…I might be better at remembering the details when I’m not so tired).



Our first appointment was at 9am. It was a neuro-psych meeting that started out with a lot of questions that began with “in the beginning…”so, describe your pregnancy”… on to a million question’s about Trey specifically. From there they took Trey and I in a separate room for at least 1 ½ hours. They tested him with stacking solid colored blocks then on to puzzles (starting with two pieces and adding up to four) but they turned them face down and not necessarily facing the correct way, then on to blocks that had different patterns on them in which Trey had to copy the pattern the doctor made with her set of blocks. They asked him questions like, “what color is the grass?”, what do you cut paper with?”, after that they showed him pictures and asked him the names of each, then showed him a set of four pictures and asked him, “which one do you eat?” For example, with only one being a hamburger and the rest being other objects. And finally they had wooden boxes with a different color felt glued to the front of each of them with tops that open. Every one had an object in them except the white one. The doctor started with two (one with an object and the empty white one). She took the object (horse) out of the red box, showed it to Trey than mixed around the white and red boxes, gave Trey the horse and asked him “where does it go?” She was not allowed to say the name of the object or the color on the front of the box. She then added all the way up to ten different colored boxes because Trey kept getting them right. She said that this test was just invented (by a doctor here in MN) and had only been used 9 times (Trey being the 10th) and that no child had got past four boxes but Trey’ memory scored him 100% on all ten J Mike and I had told her in the beginning when asked a lot of questions about Trey specifically that he had a great memory but wasn’t very verbal. I can’t wait until Thursday to meet with the doctor (she will be in our Thurs. feedback meeting) that invented this new memory test to see her reaction to Treys’ mastering her new test! He didn’t do well on the direct questions of “what color is grass?” but did great on everything else...we told you so. I wanted so very badly to help him but practically had to sit with tape over my mouth during every test – you all know how hard that was for me – haha!



From the Neuro-psych testing we went to have lunch. We stayed on campus and ate at the “Big 10” restaurant which was about two blocks away. It was snowing and we were freezing (except Mike and Broc, they loved it!!!).



We rushed back and meet with Dr. Whitley. He was such a gentle man who was so thorough and patient with all of our questions. He gave us two possibilities, leaning towards one much more than the other. One being MPS VI (let’s figure out why he’s not responding) or the other (which he believes is our case) is again the MSD. MSD (multiple sulfatase deficiency) is a disorder in itself that would mean that Trey could be deficient in up to 15 different enzymes. One of the enzymes is in fact the same that is missing in MPS VI which is why at first look they figured this is his diagnoses (and had no reason to look beyond this) but since he isn’t responding to the MPS VI treatment, we needed to pursue this further. Even though “text book” states that he would be deficient in 15 different enzymes, it doesn’t necessarily mean he is. Normally a patient with MSD would have a lot of “white matter’ in the brain and not function as well as Trey. The scary part is that he could regress at 10 or 12 or even 16 year old (no patient is the same) and although he may not mentally decline, he would loose control of his limbs (muscle control). *Please remember how tired I am, in case I’m not making myself clear~ at least I had this much, plus Mike can help explain it further (he, as well as all the boys are sleeping right now). Dr. Whitley wrote on the chalk board lot’s of scientific stuff (molecules, charts, etc.) but took his time to make sure we understood. Mike asked a lot a great questions and he can expand on this meeting. I cried a lot and am so scared but will save the heartache for the actual diagnosis (which by the way won’t come for three to four weeks later). The boys were in the room next to us playing their Nintendo ds and watching a movie…they were so good! Again, there’s so much more but we’ll leave it at this for now.



From there, Trey had a EKG and an Echocardiogram and was meet by the doctor who read these tests. She said that Trey’s heart was absolutely PERFECT!!! She said that the majority of the people she see’s doesn’t have this positive of test results. Dr. Whitley waited for us and said that this was great news. He also said that most MPS VI patients have some sort of heart problems (maybe another reason he’s leaning towards MSD).



Dr. Whitley then walked and waited with us down stairs to have Drake, Broc, Mike and I give blood for both bone marrow match and carrier testing. Drake lost his color in his cheeks and seemed a bit nauseous (remind me to expand on this). Broc and Mike did great (and me too). Broc wanted to know if the lady who took his blood was a vampire? Trey watched us all and was so inquisitive as to what we were doing. He was very adamant about his brothers getting a band aid for their boo-boo’s. This baby is so compassionate towards others!



Dr. Whitley then walked us over to another building to show us where Trey’s infusion would be tomorrow, introduced us to the head nurse and to the pharmacist…can you guys believe this VIP treatment? Drake was given some OJ and crackers (and Broc and Trey too – for being equal) since he still wasn’t feeling so great (poor baby…I truly didn’t think he would react this way). I have to say that even more than the boys seeing Trey’s infusion at St. Joes, being picked themselves along with me talking to them about Trey going through this sort of thing every week of his life made them so much more “in touch” with what their baby brother goes through…I think they will be more “understanding” from here on out.



And finally Dr. Whitely walked us to the parking garage tunnel and made sure we understood how to get from there to the infusion tomorrow. He shook the boys hands as well as Mike and I’s and told us he would see us tomorrow at Trey’s infusion (really, they do this???) Oh yeah, he then gave us a number to reach him at in case of an emergency…CRAZY, we know! We are so impressed with this man. Mike has more to tell as they got to talk a bit alone.



We have to be at infusion at 8am. Mike will drop Trey and I off then drive to Hinkley , MN with Drake and Broc to meet Auntie and drop off the boys to her. It sounds like we don’t have anything planned for Friday so we are hoping that we can drive up to Granny’s on Thursday night (if we’re not too tired or something else doesn’t come up in the meantime) to meet up with the boys, stay there until Saturday night, drive back to this hotel and leave from here (much easier on Trey’s back to not have to do so much traveling in the car seat in one day) to our flight Sunday morning.



I’m about to pass out at this computer…zzzzzzzzzzzz



More later…



Xoxox, Cami