Tuesday, July 31, 2012
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.
Thursday, August 18, 2011
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.
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
Monday, August 15, 2011
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.