Minnesota in March

Another successful trip to Minnesota , not only were our prayers for Trey’s spine answered, the boys prayers for snow came true too



Our first meeting with Dr. Regelmann, the pulmonologist, went well. Dr. Rengelmann informed us that Trey’s lungs sounded great. The doctor versed us on the fact that he doesn’t run pulmonary function tests until children reach 5 years of age. Annual visits were recommended on the basis that children with MPS conditions have narrow chest cavities thus creating concern with pulmonary function.



Next appointment was across the Mississippi river to Dr. Schwender at the Twin Cities Spine Center and we all know how promising that appointment was…Yeah for Trey! The follow up orders from Dr. Schwender was to obtain full spine x-rays in 6 months unless Trey starts growth hormone, then recheck three months after initiation of growth hormone. The good doc also agreed to continue with physical therapy and again gave no physical restrictions at this time. In regards to growth hormone, Dr. Schwender gave us the thumbs up. He regretfully informed us that Trey would eventually have to have surgery on both hips due to the dysplasia that was already evident and most likely his back, knees and ankles BUT we all know I will try to prove him wrong by trying anything and everything. I believe that what doesn’t hurt him may possible help him, so why not?!



Back across the river to our favorite doctor Whitley. Our visit was true to fashion, very informative with much time spent on Trey’s results as well as continued care in detail. Dr. Whitley had copies made of all the many different test results and once more spent the time to explain each and every one of them. Although we initially had only one meeting scheduled with Dr. Whitley, he made sure to catch up with us another day during our time at the U of M’s hospital to continue what we hadn’t finished at the completion of our first appointment. As we said goodbye, Dr. Whitley asked that if we made future appointments with other doctors at the U of M could we please include him in our schedule?…ya think?! We are so pleased with the care this astonishing man has given our son…he will always be our “go to” guy. Yet again, we were treated like “gold” and given this most excellent doctors time, patience and understanding to our current situation and all the pain and anguish our family has been through these past sixteen months. It was decided that annual visits would be adequate unless something else comes up (we pray it doesn’t) in between times.



The stimulation test for growth hormone was long yet uneventful. We were all excited to get nurse Judi, Trey’s same nurse from our last visit to MN. Nurse Judi is so compassionate and just the sweetest lady to Trey (not to mention her familiar face was probably reassuring to him). The test was four and a half hours long. Aside from the liquid Trey had to take orally, the entire test was administered through Trey’s port and other than the insertion of the needle, it seemed painless. One of the medicines that were used to stimulate Trey’s GH was klondeine which side affect is drowsiness…Trey and Mike slept almost the entire test (I probably could have too if a blood draw wasn’t taken every half hour) J. The test results should be available to us as soon as we return home. Trey’s endocrinologist, Dr. Polgreen was so wonderful to show up to the last hour of Trey’s “stim” test to explain all the advantages and disadvantages of GH for Trey and a child with his condition. I woke Mike up to help me retain each piece of information Dr. Polgreen was providing us with. The meeting was very educational. Dr. Polgreen is such a remarkable doctor, who like our last visit, gave us all the time we needed to feel comfortable enough to make informed decisions with the results of Trey’s test. Dr. Polgreen gave Mike and I hope for Trey’s future should we choose GH...even if it is just centimeters at a time.



So, on top of Trey still being as tired as could be, he also got a hold of a nice head cold from our first wintery days here in Minnesota (or maybe the one his big brother Broc brought along with him from Arizona ). With that said, we attempted a hearing test with audiology on that same day but with no success…Trey couldn’t stay awake. This was perfect timing on Dr. Whitley’s part, he showed up to finish our meeting from the day before. After the meeting with Dr. Whitely we attempted another hearing test. Trey wasn’t interested and as a result his results were less than pleasing.



The meeting with the ENT, Dr. Rimell was next. Dr. Rimell confirmed that Trey had a cold and that along with the cold and the klondeine, it was a bad idea to conduct any type of hearing or ENT evaluation on Trey at this time. Dr. Rimell was not impressed that Trey’s doctors back home hadn’t had Trey’s hearing tested as of yet. Dr. Rimell advised us that we needed to have Trey’s hearing tested back home as soon as Trey’s cold clears. For the past two years I’ve thought that Trey’s speech was delayed. We’ve have had him tested both mentally and verbally in MN (neurology) and in AZ (speech) in the elementary school system. Although both said he was on track, I’ve always thought otherwise…could it be his hearing??? Ever since the first mention of MPS IV, I’ve put two and two together thinking that his speech delay may be due to a slight hearing loss (I read to be aware that this may be a symptom of MPS IV). I hope I’m wrong about my babies hearing but Dr. Rimell said it would be more harmful to Trey the older he get’s if we don’t get this issue resolved immediately…and this (ear tubes) is nothing in the whole scheme of things.



My Auntie flew back to Minnesota with us to help us with the boys during the long days of testing. As luck would have it, a friend of my Aunts came to the hotel to pick up the boys and my Aunt the morning g after we arrived to take them all up to the lake. What a blessing this was for Drake and Broc not to have to sit through long days in the hospital or to be carted back and forth from appointment to appointment. Mike, Trey and I met the boys up at the lake not soon enough. The five of us had such a great time with my Aunt, Grandma, and cousin. The snow we wished for last November when we were here came down in blankets this time. Drake and Broc had such a fun time making snow men, ice fishing, snow boarding, sliding the snow saucer down the hill from my Granny’s house down to the lake, being pulled in a sled behind the four wheeler, making snow caves, finding secret forts in the woods and what ever else young boys can do with miles and miles of snowy land to play in…how many other kids got to play in snow like this during their Spring Break? J Trey wasn’t so sure about all the extra clothing and boots up to his knees but he too had a good time in the snow (I think his favorite part was riding on the front of the ATV with daddy while pressing the gas). Mike would still like to move to the cold if he could but the -25 degree temperatures convinced me that this is just a bit too cold to live in…visit, yes but live in…NO!



We all left with the answers we were looking for along with the same head cold…other than that, another satisfying trip to Minnesota , thank you for all your love and prayers



Love from the snow,

Cami, Mike, Drake, Broc and Trey