T+361 Farewell ANOTHER January

One year ago today I titled the post "Farewell January".  I NEVER thought I'd be posting from Minnesota a year later!  But we are finally seeing the light, I think.  Torie's labs today were great.  Her RBC's and hemoglobin are back up, and platelets are 191.  Urine protein remains negative, and steroids are slowly coming down - today was her last day on 25mg, and Wednesday we go to 20mg.  Just when she was feeling pretty good on 30mg, we cut them.  She's now trying to adjust to not feeling so happy as we change doses.  At least this is a change for the better!  We spent quite a while talking to Theresa today.  The plan is to have a final appointment with Dr. Orchard next Monday, and then leave later that week.  And not come back until Torie's 2nd Un-Birthday.  I told Theresa that when she said to come back for her 6-month check that we didn't realize she meant a 6 month stay.  That better not be the plan for the next time! 

We also saw a new specialist today - Dr. Larson is a hip and knee orthopedic surgeon.  She evaluated Torie and got more X-Rays.  We'll check X-Rays in 6 months, and we'll see her when we come back next year.  I think hip and knee surgery is in Torie's future, but we'll focus on her just getting back to "normal" for now.  Dr. Larson was quite impressed when she asked Torie to walk in the hall and Torie said "I running!"

As always, we are grateful beyond words for all you've done for us through this.  Your comments, support, thoughts, and prayers keep us going.  And Kati - thanks for the supplies to keep our strength up!

T+357 This Week Last Year

January 24, 2010

Tuesday we saw Dr. Chavers and started Torie's steroid wean.  She'll go down by 5mg once a week.  Today was her first dose of 25mg, so the countdown is on.  It'll take about 5 weeks for her to be completely done.  Hopefully this will give her a longer remission period from the Nephrotic Syndrome then the last time did.  We saw Deanna, our favorite NP, at Clinic today.  It's so hard to make a plan when we're not sure what will happen next.  So we're not making one.  We'll watch labs for a couple of weeks, and see how they are with this wean.  The biggest concern is Hemolytic Anemia.  Her RBC's were down just a little on Monday, and so was hemoglobin, but that could've been just the day of the week.  We have an appointment with Dr. Orchard on the 7th, and if things are stable then, we will leave later that week.  Cross fingers, toes, eyes, and everything else! 


January 28, 2010

 Torie was admitted to the hospital on January 25th last year to start all of this.  We were able to come back to the House for dinner that night and they served spaghetti and meatballs.  Torie's favorite!  Tuesday night, the 25th, dinner was spaghetti and meatballs.  I wonder if they have 365 nights of menus?  Our friend Zachary was admitted Tuesday, and his transplant is set for the 4th.  He is on his second day of chemo, just like Torie was on this day last year.  It seems like it should feel so long ago, but it really doesn't.  After everything, this last year has gone faster than I imagined it would.  Especially if they had told me we'd still be here! 

T+352 Still Waiting...



Torie's pictures that she made at Pre-School



Once again, it's been too long since I posted so this will be another "catch-up".  Torie is still going strong, and we're trying to keep up with her.  The top video is Torie singing the "ABC Song", and the bottom video is at PT.  Friday she was able to go to Pre-School here at the house...it's been her first chance to go since we didn't have to be any where else.  She loved it! 

Her labs this week were great.  Even platelets are up to normal range - 179.  And urine protein is staying negative.  Hooray!  Tuesday she got to go play with her dear Dr. Julie from Neuropsych.  And Torie got a terrific report.  She has gained in all areas, especially language and cognition.  Not only are these results improved from August, but they are improved from last January.  BMT kids are expected to lose some ground in the year following transplant, but Torie has gained in areas that would be considered "IQ".  Dr. Julie is very pleased.  So are we!  Tuesday afternoon she saw her Neurologist, Dr. Rothman, and he didn't see anything that is concerning to him.  Good news, indeed!

We are waiting to see Dr. Chavers (Nephrologist) on Tuesday.  Hopefully she will figure out something about steroids and pass that on to Dr. Polgreen (Endocrinology), who will review that and pass it along with her plans to BMT, and THEN they will decide what to do next.  Hopefully they will decide that this Mys-Torie is concluding and we will be able to head home.  In the meantime, we're trying to keep warm.  The high yesterday was 0 and the low was -16.  We can't wait to get home to sunny Colorado!  Thanks for checking in, and for your continued prayers for Vic-Torie!  

T+345 This Week's Results

It has just been a crazy week and I'm sorry for not getting Torie's results posted sooner.  She has been feeling really good, and running like crazy!  And Mom and I are wiped out from chasing!  But we'd much rather have her this way than feeling lousy with no energy.  I think. 

Wednesday was Torie's OR day for MRI's, eye pressure exam, and EMG or myelogram.  An EMG uses an electrical current to show how nerve impulses are conducting.  Torie's was done on her hands and wrists.  Hurler's causes a lot of carpel tunnel issues and a lot of our kiddo's end up having surgery to give them pain-relief and better range of motion.  Torie's EMG showed just mild slowing of conduction.  She was an easy intubation this time, and she did great.  When they got Mom and I back to see her, the first thing she said was "I ready to go back to the House now."  She'd only been extubated for 15 minutes!  And she got to leave after another 45 minutes.  This was the smoothest one yet.

We started Thursday at the Twin Cities Spine Center for an appointment with Dr. Schwender.  He is the surgeon that does most of the Hurler backs.  One of the characteristics of Hurler's is the rounded back, called a kyphosis or a gibbus.  Torie's is measuring at 55 degrees.  (On the left-hand X-Ray, it's about 2/3 of the way down; just below her lungs - the balloon-looking things.)  This is excellent news.  Our friend Wyatt's was double that.  Dr. Schwender feels that right now it's not something he would correct, and we'll follow it with X-Rays every 6 months.  It may get worse as she grows, and it may become surgical.  The X-Ray on the right shows her scoliosis.  It's only 10 degrees on the top, and 13 degrees on the lower half.  Again, good news.  Her cervical spine (the neck) is stable, but she still can't go in the bouncy house!  That's okay.  We're not looking that far ahead quite yet...we are just trying to get home for a while before we have to come back!

After that, we went back to the House for an hour and then went to the Specialty Clinic to see a new "Ologist" - one more on the list.  Dr. Polgreen is now Torie's Endocrinologist.  Endocrine deals with all the stuff that is hormonally regulated - gland stuff.  She is pleased with how Torie is doing; her only concern is that she may have adrenal issues from being on steroids for so long.  Her plan is to check adrenal function after steroids are done.  And hopefully that will be the 1st part of February. 

Then we headed to the Riverside Campus of the hospital.  And by then the snow was getting serious, and the roads were getting slick.  Torie saw Dr. Van Heest, the Hurler's hand surgeon.  She said that the EMG did show slowing, but she thinks Torie is doing well, and that surgery isn't needed right away.  More good news!  Of course, "right away" isn't for a year or so anyway, because of how long Torie has been on steroids.  It seems everything is riding on that, doesn't it?

Thursday night we went to Joe's Crab Shack with Kim, Pat, and Joseph.  Torie was so excited about going to eat "crabbies with Jopesh."  She had been talking about it since she got up that morning.  We had such a great time with them.  All week Torie would say "Torie hold him and hug him and kiss him."  But Joseph has grown so much after his transplant that he is almost as tall as she is.  He is doing great, and is still 100% engrafted.  They left yesterday morning for their home in New York, and we miss them already. 

Thursday at Dr. Van Heest's, we were able to meet Danny Latham.  He is a good friend of Wyatt's, and another member of our Hurler family.  He was here for his 4-year check, and he's doing excellent.  He was going to come to the House Wednesday night, and that would have made 5 Hurler kids all here at the same time.  That may be a record!  Besides Ethan, there is a little guy here named Zachary who is scheduled for transplant on the 4th (!) and another named Derrick, who will be just a couple weeks behind Zachary.  Poor Ethan has been delayed until they find out how his lungs are and if he has an infection there.  He had some nodules on CT like Torie had the day of transplant and then again last fall.  Hopefully they'll be able to treat it quickly and get him back on track.  We know how agonizing the waiting is.  We're so glad to have so many more in this crazy family we've become a part of.  Around here, Hurler's isn't a rare disease at all!

T+340 Monday Clinic

Today was Clinic Monday again.  Torie's labs from last week are good - especially her engraftment levels.  I've been sweating them all week.  But CD3 is 67%...up from 47% the beginning of November.  All of her other studies are looking good too.  Today's platelets were up to 137.  Hopefully if she can stay this way we will head home in about a month.  I hate to be too optimistic because we all know Mys-Torie!  Every time I have a plan, she changes it.  We are doing her 1-year-post stuff this week and next week.  Wednesday she goes to OR for her Lumbar Puncture (LP), MRI's, and myelogram (I'll follow that up another day.).  On Thursday she will see Dr. Schwender of the Twin Cities Spinal Center, Dr. Polgreen, endocrinology, and Dr. Van Heest from orthopedics.  I'll definitely post what we find out.

In the mean time, she is very happy to have Joseph back for his one year evaluation.  And I am very happy to have Joseph's Mommy, Kim, back.  She has been such a support for me, and I so value her friendship.  Definitely another Silver Lining.  I so treasure the friends I have made here.  When I start to feel sorry for us being here for so long, I think of the friends and family we have supporting us, and realize how very blessed we are.  Thanks for all you do...you are helping us reach our Vic-Torie! 

T+336 An Un-Birthday!

Yesterday was Joseph's 1st Very Merry Un-Birthday!  We are so happy for him and Kim and Pat.  Joseph is doing great, and they are heading back here to the UofM for his 1-year follow-up this weekend.  We are all super excited to them!

We have a new Hurler family here - Zachary and his parents.  That makes 4 Hurler kids here at the same time...maybe close to a record!  Last night we had dinner with Wyatt, Nicole, and Todd, and this morning they headed out for home in Florida.  We have had so much fun having this awesome family here with us for the last few weeks, and we are going to miss them so much.  We are sending happy thoughts and prayers for a safe journey home with them! 

T+334 Playing Catch-Up...Again

I have to apologize once again for not posting sooner.  Torie is doing well - her labs are looking good, and yesterday's Echo showed that her left ventricular ejection fraction is up to 55%.  Much better than 40%!  Her blood pressure is good off Enalapril, and her cardiologist, Dr. Braunlin doesn't need to see her until next year.  We are starting our 1-year post-transplant appointments this week.  It was a year ago today that we started all the pre-transplant stuff.  And it was 1 year ago yesterday that we arrived here at our home-away-from-home. 

Tom had to go home today, but it was great having him here.  Torie had a blast playing blocks and trains with him, and he went to more tea parties than he has in a LONG time.  Mom and I enjoyed the break.. we watched TV and even got in a couple of naps.  Uninterrupted.  That's a big deal. 

Baby Sydney and her family finally get to go home tomorrow.  They arrived here at RMH on January 5, 2010.  It definitely won't be the same without them, but we wish them safe travels and continued good health.  They will be missed so much.  Thanks for checking in on our New Year of Vic-Torie!