Day 3 in MN {he is my HERO!}

Once again all of our prayers have been answered and are working Trey did an amazing job today, he is my HERO!



We arrived at 9:15am and left at 7:30pm…such a long, long day for such a little guy. Because of the surgeries planned for today, Trey wasn’t able to eat anything after 4am or drink anything after 9:40 am, I was so worried that he would start crying for food or water. We waited in the pre-op area until 1:15pm and he only asked twice for water but left it at, “no” and was the perfect patient. I was so thankful for his sweet disposition because many other children would have been throwing a fit by now.



I was able to “suit up” and be with him as he was put under anesthesia …again he was so calm and sweet. He was very inquisitive as to what all the people were up to but never expressed fear, only a bit of discomfort as the mask was held over his face. I kissed him, said a prayer in his ear and left with a peaceful feeling knowing he was in great hands and having a “good feeling” about why we were doing what we were to our precious baby.



At 3:20 pm we were told that Trey’s spinal tap was complete and that he didn’t have pressure on his brain meaning he did not have a hydro cell…Thank you God! The amount of relief we felt was indescribable…our prayers answered and another item checked off our list. Dr. Whitley spent so much time with us before the surgeries and explained that other than results from the spinal tap and the MRI of the head/brain and neck (which we will receive tomorrow) all other tests and results would bring us answers within the next month.



At 5:30 pm we were walked back to the recovery room by Dr. Whitley, to Trey who was lying in bed so lovable and still a bit non respondent. Little bandages were stuck all over his body from the incisions made from the surgeries that he underwent today. He was not happy with the fact that the catheter was still in place as he was coming to, do you blame him? I saw Mike’s face cringe as they pulled it out, he couldn’t even watch. Trey was given a cherry Popsicle before we arrived and had done very well with “keeping it down”. After he was put in my arms (which at that time I melted and was filled with intense love for my youngest child), he immediately asked for cookies (remember he hadn’t eaten one thing all day). He polished off a bag of chocolate chip and nutter butter cookies as well as some batman fruit snacks. As soon as we were discharged he wanted to “cash in” on the promise we had made to him before his “nap” that we would go for ice cream…I didn’t think #1 he would remember or #2 he’d still be hungry for it. He had an Oreo cookie shake as well as helping me with my waffle cone…too funny! But wait it’s not over, when we got to the hotel room he ate two cups of vanilla pudding…I will hold my breath to see how well he makes it through the night.



Right before he fell a sleep he needed to go to the bath room but just as we were told because of the catheter, it would burn. He said it hurt to pee and didn’t go a drop. I was so sad for him and worried that he would be afraid to try again. Right now he’s sleeping like an angel and I just thank God for the success we had today and the test’s that were completed. We just know that these long days are all well spent and will bring us so many answers, the answers we have been looking for for months now.



Did I tell you all how amazing Dr. Whitley is? He is so not doing this for the paycheck, he genuinely cares about Trey and our family, as his actions prove it daily.



Tomorrow morning Trey will again give a urine sample as well as blood to send off to two more lab’s for testing. At 9am we will meet with a leading authority, neuro psychologist in the field of MPS related disorders for a feedback session from Trey’s Monday testing. At 10am Dr. Whitley pulled some strings to allow us to be able to meet with another “big wig” in the field, this time related to growth troubles in MPS patients. And finally at 1pm we will meet with the spine center to fully evaluate Trey’s kyphosis (most likely having x-rays taken at this time of his spine).



We called Drake and Broc at their Great Grandma’s tonight, they too had just come home from getting some ice cream. Both of the boys sounded so happy. We didn’t go into detail about Trey’s day but let each of them talk to him as they both sounded concerned and wanted to say hi. Trey was as happy as could be to hear his brother’s voices on the other end of my cell phone and refused to give it back to me when I asked-haha. We are very blessed to be able to have family here to watch them as we are going through all of this at the University but in the same breath miss them after a day at the hospital is threw!



Mike and I are so thankful for the doctors here and their expertise in the field of MPS disorders along with the Willis family for strongly (almost insisting) that we go see Dr. Whitley here in Minnesota ! It’s so amazing how all the events that happened in the order that they did to bring us to this place in our journey We feel so much stronger not feeling the uncertainty we have since Trey’s diagnosis, knowing that Trey’s care is now in the hands of some of the best in the field. Also having these doctors have a face with the name and the condition, puts my heart at ease that no matter what comes our way, together, with these doctors, we can handle the next step.



With hugs,

The Lanes~Mike, Cami, Drake, Broc and Trey