Thursday, June 16, 2011

Thursday already?!?!?!?

So we have been here in Minneapolis for something like 5 days already, and it has really flown by! We have been busy, busy, busy! Between the full days of appointments and then hanging with our Hurler friends back at the RMH, we have had little time for blogging. I'm going to try and catch up by giving a condensed summary of the appointments we've had so far, and anything that needs further explanation I'll address in a later post.


Our first visit was to the BMT clinic where after a disastrous attempt at drawing Gracie's blood, we saw several of our old friends... most notably our BMT Nurse Coordinator- Teresa, and Dr. Orchard- one of our 2 beloved BMT physicians. They were so excited to see Gracie running around and showing off. They were impressed to see how big she is and how much talking she does these days. :) We spoke for a few minutes about the study that Dr. O still has in the works for doing the enzyme infusions post-transplant, but nothing was decided yet and once the study is up and running, we'll discuss it more.

Next we had several X-rays and a Bone Scan so see how her growth is going. We will get those results later today when we see the Endocrine doc, but this year G "took her pictures" like a pro. :) It was a nice change to not have to hold her down during an X-ray.

Then we hopped over to the Gillette Children's Clinic to see our Ortho doc, Dr. Walker. We were very anxious to see him and check out Gracie's hips and knees for her possible upcoming surgery. His report was better than expected. Her hips still need to be addressed, but it is not an urgent issue. He'd like to do the surgery sometime within the next 2 years, so we have time to make plans. He's actually seeing some improvement in her knees (YAY), so we're not really looking at doing anything to them unless we do the hips sooner rather than later. Overall, that's good news for us.


Tuesday morning we went for an echocardiogram of G's heart. Again, she was well-behaved and relaxed she watched Strawberry Shortcake and listened to her heartbeat and watched the colors on the echo screen. All in all the test went well.

We left the echo appointment and went up to the surgery department to be sedated for our EMG (Nerve Conduction test- testing for Carpal Tunnel Syndrome) and the MRI of her brain and spinal cord. Unfortunately, there was a delay in the OR and we were stuck in pre-op for several hours. Gracie did not go to the OR until almost 1 pm, and she was so hungry and thirsty by that time that she was miserable. The procedures themselves took some time as well and we didn't see her in the Recovery room until almost 5 pm. Mommy was a little more anxious than usual after all that time, but Gracie recovered like a champ so we hit the Noodle place for dinner on the way back to the RMH.


1st thing we had to do was an EKG prior to our Cardiology appointment. Unfortunately, Gracie did not have a good experience on Tuesday night with removing the electrodes for the heart monitor she had to have during surgery, so she was not happy with the idea of more stuff being stuck to her body. She loudly protested the EKG, but with the help of some Strawberry Shortcake, and a vivid light-up magic wand, we were able to get a decent reading.

Dr. Braunlin (the Cardiology doc) came in and let us know that we had some good and not so good changes on our Echo. However, she was quick to say that she had not been able to pull the Echo up on the computer herself and study it, so she didn't want us to worry yet. The good changes are that Gracie's heart walls have thinned more and look very good, and her Ejection Fraction (more on this later) remains unchanged at 36. Her EKG looked good as well, However, there is possibly an increase in the amount of leakage from her aortic valve, which is unexpected this soon after transplant. Her aorta itself seems to be larger than it should be as well. Dr. Braunlin assured us that she will check into it and make sure that we know what we're looking at, but that either way these problems do not need to be dealt with at this time. We need to plan for another Echo in 6 months at home at Nemours. In the meantime, Dr. Braunlin will look at our Echo herself and let us know.

We went to see Dr. Bothun in the Ophthalmology clinic next, and he was really happy to see how well our girl is doing. Her functional vision is very good, however she is still far-sighted (which we learned is not the the opposite of nearsightedness- we'll explain more about that later as well.) and since the issue does not appear to be correcting itself, we may want to consider getting her some glasses to help. It's not a requirement, but it could potentially help her eyes to correct the issue themselves. We'll come back to this later.


This morning we had our Audiology exam and visited with the ENT doctor, Dr. Rimmel. As it turned out, Gracie had a LOT of wax in her ears, so before we could take the hearing test, we had to get a good ear cleaning. Gracie was NOT happy with this, but we got it done, and the doc was able to get some big, yucky chunks of wax out of Gracie's ears. Imbedded in the wax that came out of G's left ear, we found her long lost left PE tube... turns out that it has been out of her eardrum for a while, making Gracie tubeless. So we did the Audiology test and G got a normal score. The doc came in and looked and pronounced that we no longer need our ear tubes. YAY! No more ear plugs in the bath or pool. Good news from ENT!

We're leaving now to see the Endocrine doctor. We'll report back as soon as we can.

Wednesday, June 8, 2011

And the worst blogger award goes to......

GRACIE'S MOM!!! (boo, hiss, *throw rotten tomatoes*)

Yes, here I am crawling back with my tail between my legs to dust off our poor little neglected blog. I have no good excuse, just straight up haven't gotten around to blogging. I hope our loyal readers (if we have any left!) will forgive me.

On May 8, 2011, we reached our 3 year transplant anniversary and Gracie is still doing wonderfully!!! Praise God!

She completed her 1st year of Pre-K and had a complete blast! She loves her teachers and friends, and we are thankful for the opportunity to place her in such a wonderful program. She will go back to Pre-K again next year and then when she is 5, we will enter kindergarten. Gracie has other plans, of course, and she plans to go straight to Kindergarten tomorrow. :) Needless to say, everyone at Westside Elementary is in love with her....not that they can help it, of course.

We are getting ready to head up to Minnesota for our 3-year post-transplant checkup. As always, we have a full week of appointments and tests scheduled with all of our wonderful physicians and we are looking forward to seeing everyone. This trip we will sadly miss our beloved Dr. Tolar (Mommy's forever crush), but we will be seeing Dr. Orchard in his place, and we aren't complaining about that. :) We dig Dr. O too.

We are definitely interested in hearing what all of our docs have to say, but we are especially interested in seeing how Gracie's growth is going to see if we will eventually need to give her growth hormone shots. Also, her hips and knees have been a little bit of a concern and we had originally looked at having surgery this summer, but the timing was just not good. I'm hoping to get a better idea of how necessary this surgery is in the near future, and make some plans. Last year, her hands showed the beginnings of Carpal Tunnel Syndrome, a common occurrence for Hurler kids, and so we're interested in seeing if its progressed any further, and what we need to do about it. Lastly, we want to talk with the pulmonologist regarding asthmatic-like issues Gracie seems to have occasionally when she gets a bad cold.

It will be a busy trip, and we are so excited that we will be able to spend a little bit of time with our Hurler friends Rylie and Wyatt who will be having their checkups too. :) And of course, we can't wait to see Jerry and our friends at the Ronald McDonald House who have always been so wonderful to us. We are also looking forward to seeing the brand new Amplatz Children's Hospital for the first time. We hear that it is totally amazing!!! Our friend Rylie's Daddy and I sat on a parent panel when they were planning the BMT unit and we got to weigh in on ideas and share experiences. Can't wait to see how it all turned out. :)

So that's all for now. I will try to be a better blogger while we are there and keep everyone updated on all of the appointments. We'll see how it goes.

The last picture is kind of old (from back in October), but Gracie insisted that we put this picture of her friend Pat on this blog post. :)