Thursday, March 25, 2010

a (late, late, late) checkup update!

Sorry everyone. I have been meaning to hop on here and give updates regarding Gracie's week of appointments in MN, but we seriously hit the ground running when we got back home. My school schedule is demanding and busy, and it seriously leaves me so tired at the end of the day, I can hardly think about my homework, much less blogging. :( Sorry for the delay, but here's a summary of Gracie's 2-year post-transplant checkup.

Cardiology: Dr. Braunlin was again very happy with the results of Gracie's ECHO and EKG. Apparently, Gracie's heart valve issues are still stable, and again may have shown a slight degree of improvement from last year. Her heart walls, which were thickened last year from the extended use of the anti-rejection (steroid) medication, have thinned back into the normal range since she is no longer taking the med. Dr. Braunlin kicked us out of her office again and like last year, she pronounced us too healthy to be there. Love it!

BMT Clinic: This appointment began with a not very fun blood draw requiring both Jimmy and me to hold Gracie still while they drew lots of blood for many different tests and studies. But soon after, we were waiting anxiously to see our very good friends, Dr. Tolar and Nurse coordinator, Teresa. When they entered the room and saw our Gracie, they could not stop talking about how wonderful she looked! Dr. Tolar did a short exam, pronounced that Gracie is his Hurler Poster Child, and proceeded to cheer Gracie on as she shared lots of her tricks and even showed him how to edit her chart on the clinic computer. :) Whoops. Anyway, it was a joyful appointment, all smiles and hugs and claps, and Miss Gracie *loved* all of the attention she received.

Genetics: A visit with Dr. Whitley was next and ended up being much more exciting than expected. While we spoke about the latest treatments coming available, and especially the current studies ongoing which are attempting to curtail many of the post-transplant issues that our Hurler kids face. We shared thoughts, and discovered that we have all be pondering the same question... could an overabundance of enzyme, especially in areas that are trouble areas for Hurler kids due to decreased vascularity of those specific tissues, help delay or even avoid many of the issues these kids tend to face? Well, to make a very long story short, we were considering a kind-of experiment - a one-time ERT infusion followed by multiple urine specimens in order to gauge decreased GAG output and duration of effects. As it turned out, we did not end up participating in this little experiment- mostly because it would disqualify us from enrolling in a study that Dr. Orchard is hoping to open by summertime. The basic idea is to take post-transplant Hurler kids, give them weekly ERT again and follow them closely to monitor whether they have the need for as many corrective options or if they even make improvements. Several of Gracie's specialists are on board with this, and helping with this particular study and they seem really excited about the prospects. We are very interested in this particular study and we're hoping that we will be able to learn more about it soon.

More later, I promise.

Thursday, March 11, 2010

I know I owe an update...

but we are totally wiped out. Apparently those who are in charge of our schedule here have forgotten that we have a little Peanut who requires a nap in the early afternoon- meaning that we have missed it every day this week. This has resulted in a grumpy girl for Mommy and Daddy to deal with which in turn has made us grumpy and tired too.

I promise to try and update about our appointments soon. Tomorrow is a light day, but we hope to take Gracie to the mall in the afternoon to ride some rides at the Nickelodeon theme park. We want to be sure we associate some fun with visiting MN, not just doctor visits.

We've had mostly good news, a little bit of tough news, and a few interesting developments to share with you all. Until then, please keep us in your thoughts.


Sunday, March 7, 2010

Check-up schedule

Just to keep everyone informed of what we'll be up to over the next few days, I'm going to post our schedule of appointments for the week.

Tomorrow (Monday 3/8) starts with an Echocardiogram, followed by a visit with our cardiologist, Dr. Braunlin. We'll go from there to the BMT Clinic for labs and a physical and then an appointment with our beloved transplant doctor, Dr. Tolar. We'll finish the day with a visit with our geneticist, Dr. Whitley.

Tuesday 3/9 - We will check in at the Outpatient Surgery floor where Gracie will have an MRI under anesthesia and also an EMG- a nerve conduction test for her hands. She'll see her opthamologist, Dr. Bothun, in the afternoon after the procedures. I'm sure that will be a fun appointment- yikes.

Wednesday 3/10 - We'll visit Dr. Laguna for Pulmonary and then have an chest Xray and an EKG. In the afternoon we'll have an Audiology exam and a visit with the ENT doc.

Thursday 3/11 - In the morning we'll be driving to Minnetonka (wherever that is) to the Gillette Children's Specialty Clinic to see Dr. Walker, the Ortho doc who concentrates on Gracie's hips, legs, and feet. We'll make our way back here to Minneapolis and finish our long day with several more appointments - Endocrine with Dr. Polgreen (Love her!), Neurology with Dr. Rothman, and we'll start the Neuropsychology testing. We will go back to Neuropsychology early Friday morning to complete their assessments, but it won't be the same without our Dr. Kendra. We will meet a new doc, Dr. Ziegler this time.

Somewhere in between all these visits, we plan to stop by Unit 5-D to see our sweet nurses, and also over to the rehab center to visit our therapists. Should be fun times. :) I'll do my best to keep everyone updated on the outcomes of all of our appointments as we go through them.

Keep us in your thoughts so that we hear nothing but good news this week.

Much love.

Friday, March 5, 2010

Leaving on a jet plane...

We fly out today at 11:45am and arrive in Minneapolis around 4:30 pm. Please pray for safe travels and a happy little traveler. :)


Wednesday, March 3, 2010

Day +664

Wow... look at that! We are at day +664 post-transplant. Sometimes I can hardly believe it has been so long since we were in our little room on Unit 5-D smelling the creamed corn smell of Gracie's new stem cells!

Gracie continues to do wonderfully of course and Mommy has been very busy with school which is definitely challenging and exciting. But it really has been a commitment and has taken me away from Gracie a lot. That part has been a bit harder than I expected. We're all being strong and working it out though and we know it will all be worth once December rolls around. :)

Mommy has Spring Break this coming week, but instead of resting relaxing in a warm, tropical locale, we are headed back to freezing Minneapolis for Gracie's big 2-year post-transplant anniversary! Despite the weather, we're really excited to be visiting with our RMH friends and of course our beloved docs and nurses who took such good care of our girl. We're sad to say that we will be missing our best transplant friend, Rylie, this trip, but we hope to see her next year, and of course we'll give knuckles to all the docs and nurses for her. :)

While we know that Gracie will continue to impress everyone up north like she always does, we have been wondering a bit about her hands lately- her fingers don't straighten completely unless we push them straight. Kids with Hurler's Syndrome tend to have lots of Orthopedic issues, and hands and fingers are at the top of the list, so while the issue didn't come as a surprise to us, we do want to have it looked at to see if we can prevent any further issues. Gracie will be having special testing done on her hands to see if we need to plan for any interventions to keep the problem from progressing. Gracie will also be having appointments with all of her regular specialists as well and we're looking forward to seeing how they think she's doing and if we're looking at any other problems right now. We know that she will probably need some surgical intervention on her knees and hips at some point, but we're hoping those will be down the road a bit.
So while we're really excited to show her off this year, we do have worries in the backs of our minds that some of her issues may have progressed. We're hoping for the best though, and we know that our folks in MN will guide us as we work through it all.
Please keep our friend Wyatt in your prayers for us, he is in MN right now and he is recovering from back surgery. We hope to be able to hang out with him, but he might be heading home by the time we get there. Either way, we pray for quick healing for Wyatt and a safe journey back home.
Please pray for our travels as well... we're flying out on Friday morning.

Much Love.

Friday, January 8, 2010

A new year... part 1

So as 2010 has arrived and we've kept plenty busy. Gracie has been doing so well and has enjoyed an exciting holiday season. We attended 2009's MPS Family Conference last month for the first time and we really enjoyed it and learned quite a bit. The conference was held at Disney World this year so it was a pretty easy trip for us. We participated in a focus group for Genzyme (the company which provides the synthetic enzyme which Gracie received while being prepped for transplant), and then spent the next few days attending sessions specific to concerns that affect us directly- post-transplant issues, what to expect in adolescence for MPS kids, emerging research and treatments, and reproductive issues regarding testing and other options available for when we choose to have another baby- all very informative sessions. Gracie got to hang out in the provided childcare room while we attended these sessions and she really loved it. She really loves being around other kids, and we were really pleased that she took to the caregivers so easily. Never once did she cry when we left and I think the leaving was actually harder on us than her. This part of the experience has given rise to the idea of possibly putting Gracie in a childcare/school program soon. We're still thinking about it, and of course we need to be sure that all of her immunizations are up to date before she goes. Hopefully we can get that yucky business worked out soon and then explore some good options for her.

Also at the conference we were able to meet and spend time with other MPS families, which in my opinion was the best part. We got to hang with old friends like the Blancheri family and little Wyatt, and Danny Latham and his family as well. We met new friends too- I enjoyed spending time with Bella's mom, Elizabeth, Erica- an adult with MPS 1, and Brinley and L.B.'s moms- Mandy and Michelle, who after 5 minutes time felt like sisters to me. While the reasons we have been brought together are difficult, spending time with these people who know exactly what we're going through is such a comfortable and easy thing.

We spent the last 2 days at the Magic Kingdom and Animal Kingdom where Gracie succeeded in shutting both of the parks down. She rode a few rides and saw some wonderful parades and spent the day in the Animal Kingdom with our beloved "Aunt" Bee (aka Godmother Laurie) and just all-in-all really enjoyed ourselves. While some of the sessions gave us a hardcore reality check regarding obstacles to come, we still are so thankful for the successful transplant which saved our precious girl's life and we will face whatever comes with the same hope and determination, and with the unwavering love and support of so many loved ones.

Stay tuned for part 2- lots more to share!