2012 Checkup Week

So again we are blogging on location in Minneapolis, for our 4 year check-up update!!! We got here last Friday (7/27) and spent the weekend doing lots of fun things before buckling down for all of our appointments this week. Friday night we went for a quick visit to the Mall of America where we picked up a truly fabulous pink hat that we have barely taken off since we found it. On Saturday, we went to the Como Zoo and Como Town and we enjoyed seeing the animals and riding lots of rides. Sunday took us to the Minnesota Children's Museum where we had a blast learning and pretending. Throughout the weekend, we enjoyed our stay at the posh Sofitel hotel where we practiced our worst french accents and just appreciated the gorgeous decor and big cushy bed. :)

Yesterday we began our appointments with Dr. Polgreen, our Endocrine doc, who is enrolling Gracie in a new growth study to follow the pattern of bone growth in children with certain types of MPS. It was a brief visit, spent going over the various scans and xrays required. Gracie was her usual charming self, and she really impressed Dr. Polgreen when she told us all what the definition of symbiosis is. :)  I wish I had a picture of the doc's face. It was priceless! We went on to a quick appointment at the BMT clinic for a history and physical before zooming over to St. Paul and the Gillette Clinic to see Dr. Walker, our Ortho doc.

I must admit, going to see Dr. Walker is always stressful to me. For the past few years, he has been warning us that Gracie would be needing some hip/knee surgery soon. This year I was really concerned that I would hear that the time had come. Thankfully, that was not the case- and we got the wonderful news that for now, her hips have stabilized and we can table the hip surgery discussion for another 2 years. Also, it appears that her knees are showing signs of improvement and may not need surgery at all. I was so relieved and excited to hear this news... it made for the end of a good day.

We also moved into the Ronald McDonald House yesterday evening, but we had to head to bed pretty early to prepare for our early morning appointment in Surgery.

This morning we were all up by 5am and we headed over to the hospital's surgery floor. Gracie is still so young, so many of her tests need to be done while she is under anesthesia. This morning she had an MRI, lots of blood draws, and a nerve conduction study on her hands to see how the Carpal Tunnel surgery from last summer worked for her. She went into the OR somewhere around 8am and we were able to see her in recovery by around 11:30am. She did great and tolerated the anesthesia very well. When she woke up, the first thing she asked me is if I remembered when Donald Duck was bitten by a baby duck on Mickey Mouse Clubhouse. :) Our girl was just fine and we had a good laugh with the recovery nurse.

From surgery, we took her to the cafeteria for lunch where she inhaled a chicken/cheese quesadilla! She was a hungry little monkey!

We headed upstairs to get an EKG, and then to meet with neurologist to hear the results of our morning tests. We were very excited to learn that her carpal tunnel surgery was a total success and that she has regained full conduction of the nerves in her wrists and hands. Woohoo! Her MRI looked great as well. Nothing concerning to report there which makes us very happy.

So that wraps up the first 2 days with nothing but good news to report so far. We have lots more coming up in the next few days. We start our day tomorrow with a visit with the opthamologist, followed by ENT, an ECHO and our cardiology appointment (another nail biter for me). We'll be sure to keep you all updated. Thanks so much for all of the thoughts and prayers.

Much Love.

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!

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.

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.

xoxo.

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.

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. :)