Thursday, August 18, 2011

The Spoils of War (aka RMH Bingo)

We won 2 games of Bingo tonight here at the RMH. Anyone who has played Bingo here knows that its a serious sport around these parts. We are so thankful to have scored these awesome prizes!!

Thanks so much to the Ronald McDonald House for all the fun and smiles they give to the families here.

Goodbye casts... Hello splints

So the casts came off today and Gracie's incision sites look great! Dr. VanHeest was very happy with the way her hands are looking, although Gracie was not happy at all. She wasn't really in pain, but when she saw her hands she completely freaked out! Poor baby. I didn't think about how scary it would look to her, just that she would be happy to get the casts off. We covered them up with bandages pretty quickly to calm her and then exchanged the bandages for a stocking-like thing to wear under the splints. Then a pink lollipop completed the calming process.

We then headed over to Hand Therapy to get our custom splints made. This process was pretty cool. The therapist melted a piece of plastic in warm water and then shaped it to Gracie's hand and arm and let it cool. She added the velcro straps to hold it on, and Voila: Gracie-splints! Pretty cool stuff.

Gracie will have to wear the splints for 4 weeks. Her fingers are free to allow for movement. She will need to work them a lot to achieve the maximum benefit of this surgery so we will be doing lots of therapy- both at home and with a hand therapist. We'll need to do Hand Therapy visits for 6 weeks. After that, we're hoping that Marcie (our OT at school) will be able to work intensively on our fine motor skills in order to catch us up.

That's the plan for now anyway. :)

We're getting ready for Bingo Night at the RMH! Woohoo! We'll let you know if we win!

Tuesday, August 16, 2011

A new day, a ZOO day

So today was a much better day for our girl, despite those pesky hand bandages. After a late breakfast, she perked up enough to attempt an outing to the Como Zoo, a small (but totally awesome) zoo and conservatory nearby in St. Paul.

We ended up having a wonderful day. Gracie really enjoyed looking at all of the exotic animals, eating tons of cotton candy, french fries, and rock candy lollipops. :) Then we hopped over to Como Town, a small amusement park in the zoo, and Gracie proceeded to ride several rides (even big ones!) despite her bandaged hands. I was so proud of her for being such a brave girl! :)

We have a follow-up appointment scheduled for Thursday afternoon, but that's the extent of our Dr. stuff for the rest of this trip. We'll find out then how long the bandages must stay on, and what kind of OT we should expect for when we go home.

I guess we really need to be attempting to come up with more day outings to keep our girl occupied until we leave on Sunday. :) Not sure what we'll do, but I know that we're probably in the right place to find out. We'll stop by the RMH program office tomorrow and see whats up. :)

For now, pictures from our zoo day.

Monday, August 15, 2011

R&R at the RMH

Gracie has been resting relatively comfortably at the RMH for a couple of hours now. She HATES her bandages, despite their snazzy colors, and she is super frustrated at not being able to use her hands. :( I really hate that for her. Her independence is so important to her.

So far, I have not heard any complaints of pain, but I am hoping to get her some Ibuprofen on board soon in order to get the jump on any breakthrough pain that might show up. Other than that, we're to keep the bandages clean and dry until Thursday, when we have our follow-up appointment with Dr. VanHeest.

So, let me backtrack and tell you a little more about our conversation with Dr. VanHeest when she finished with Gracie's procedures. I put a picture below of what the Carpal Tunnel is so you can see what kind of damage the compression of those ligaments can cause. Dr. VanHeest said that when she released the band of ligaments that was causing the constriction of the tendons and nerves, it looked as if there had been a rubber band there in that spot. There was an indentation left by the tightening ligaments in the tendons and learning this made us all (including the Doc) very glad we went ahead and took care of this problem sooner rather than later. Who knows how much longer she would have had function in those nerves, tendons, and muscles????

Her trigger digits were similarly identified. Dr. VanHeest found areas of the tendon sheath where it was obvious that it was catching and causing the triggering to occur. It was just a matter of cutting the sheath away to allow the tendons of the fingers to move freely. Trigger digits can be painful when attempting to straighten them, and as time passes they can become permanently contracted if left untreated. See below for an illustration of what I mean.

So that's what happened this morning. Gracie has really been a champ through the whole process. We are so proud of her.

Thanks for the prayers and love being sent out for us. We feel it enveloping us at all times.


Surgery time

We arrived in Minneapolis late Saturday night and got right into the RMH. Thank goodness. We rested and did some shopping yesterday, and then enjoyed some playtime at the RMH.

This morning we were up at 4 am and we checked in for surgery at 5:30. Dr. VanHeest came in for a final check and then Daddy took Gracie back to the OR. The procedure should be pretty quick, not much more than an hour. The official procedure is as follows: She's having carpal tunnel release on both hands and her right index finger and ring finger trigger digits released. The ring finger was a surprise add-on after the dr visit in pre-op.

Gracie was not anxious prior to surgery at all which was great! She played and chatted and blew bubbles through the whole pre-op and then requested pink and purple bandages- one on each arm. :) We'll post pics if she gets her way.

Will update more later. Stay tuned.

Thursday, August 11, 2011

Back to MN we go....

So we're hopping a plane on Saturday night and heading back to Minnesota.

I've been neglecting the blog (AGAIN) so what you don't know is that one of our last appointments was with the orthopedist to go over Gracie's nerve conduction study in her hands. The results were not so good. Her right wrist is severely constricted, causing her median sensory nerve to be almost asleep despite electrical stimulation. The tendons must be released ASAP to avoid permanent loss of function to that nerve which can lead to muscle wasting, disfigurement, loss of function to the hand itself, etc.

The Doc recommended surgery as soon as possible. If we could have, we would have just stayed in MN for another week and just gotten it over with. However, with Mommy and Daddy both having new jobs, that just was not an option. :(

Gracie's surgery will be Monday morning at 7:30 am. As far as I can tell, she is having Carpal Tunnel release on her right hand, and Trigger digit release on her right index finger. I had hoped that we would be doing both hands at the same time, but according to our paperwork, its just the right one.

Your prayers, as always, are appreciated. :)

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. :)