Moving right along...

Literally.

Words cannot express the pride and joy I feel, so I'll just share it with you this way.

In addition to this amazing progress, Gracie has been given a green light to prepare to head home to Florida! We're in the process of making arrangements to bring her home in about a week! We are so excited to have our little family back under one roof soon and we are so thankful for all of the prayerful support, as well as all of the amazing cards and gifts that served to brighten her long days.

Gracie will continue her recovery and therapy at home, with a goal of walking unassisted and ditching her wheelchair by the time school starts. Please keep her in your prayers as she continues working hard to regain her independence. We are so proud of all she has overcome and we are grateful to God for keeping His healing hand on this precious girl.

Much love.

They say that God never gives you more than you can handle...

...I wish he didn't trust me so much.

So, all has been well in Minneapolis. Gracie has been resting and healing at the Ronald McDonald House in anticipation for her first big follow-up appointment which is tomorrow. We are hoping to hear great news from Dr. Walker, clearing her to begin weight bearing exercises like standing and walking. We're also hoping to establish a timeline for bringing her home as well, so we ask all of our Gracie fans to be in prayer with fingers-crossed that Gracie does well at her clinic appointment and also her first therapy appointment which will be after she sees Dr. Walker.

Last week, Gracie's Noni and Munts surprised her with a secret visit to Minneapolis. They had a few really great days together, and they spent some good quality time without the rush of many planned activities. If you're curious to see Gracie's feeling about the surprise visit, allow me to direct your attention to the photo below.  :)

While Gracie and her grandparents were enjoying a special visit, Mommy and Hank were busy taking care of things at home. Noni and Munts recently had a stray cat adopt them, then deciding to bring her kittens to live with her at their house as well. Hank and I spent most of the week at Noni and Munts' house, aka "KittyLand" taking care of the new brood and keeping the peace. On our last night in KittyLand, Hank suffered a nasty fall out of the bed at 4 am and managed to break his arm. Hank's Official Diagnosis: Supracondylar fracture of the humerus. This spectacular feat earned us a visit to the local hospital, and then a nice ambulance ride to ShandsUF.. where they dropped the bomb that Hank would also need surgery to place pins in his arm to aid in setting it. I laughed in the doctor's face when she told me that was what was going to happen. My Official Diagnosis: Slight Fracture of Sanity. We ended up having a lengthy wait for surgery, 6+ hours after it was originally scheduled and my sanity continued to splinter. However, Hank came through it like a champ and managed to consume 4 red popsicles for a late dinner after it was all over. He certainly earned them!  We were released to come home the next day with a heavy soft cast that will be removed on Wednesday. The pins will be removed that day as well, so please pray for our baby boy as I suspect that it will not be a pleasant ordeal to remove them. Also pray for speedy healing- thankfully he is not in much pain and is ready to get back to being the happy-go-lucky clutzy boy that we know and love.

Please continue to be in prayer for our family. I tell this story with humor because that's my coping mechanism, but in truth I am kind of hanging on by a thread. On the other hand, I am so grateful that my children are both on the mend, and are not suffering like so many other children and parents may be tonight as I write this post. In spite of the difficulties we are enduring, we are truly blessed with each other, a supportive family, wonderful friends, an amazing church family, and generous and understanding employers. Not to mention the many friends- known and unknown- far and near who are praying for us and sending their good thoughts to Gracie through the mail. 

If you look at the big picture- my cup runneth over. 

But honestly, I'm just trying my hardest to hang on through this wild ride. Thanks for your thoughts, prayers, and many kindnesses. Much love.

All is well in Minneapolis!

Gracie has been enjoying her time out of the hospital and back at the Ronald McDonald House. She has made lots of neat crafts, visited with many volunteers, petted several therapy dogs and so much more! We are so thankful that such a place exists and that we are blessed beyond measure to be a RMH family! The House and it's amazing staff and wonderful volunteers are totally focused on the needs of the families who stay with them, and especially the kids who live day in and day out there- often shuttling to and from the hospital and/or appointments. Théy foster a sense of belonging, fun, and even creativity with the many activities they provide.

Today, Gracie participated in a play presented by the RMH kids. They performed Annie in a production especially for the families. Gracie played Cassie, one of the orphans. She did a great job saying her lines and singing and dancing (with a little help from friends pushing her wheelchair). Although I wasn't there to see it, the mere fact that she was a willing participant was enough to make me bubble over with pride. This kid won't let her recovery get in her way... Classic Gracie. It's no wonder she inspires so much love from those around her, she is truly a treasure and a precious gift from God. I thank Him everyday for such an amazing gift.

Gracie as Cassie in the RMH production of Annie!

Speaking of amazing gifts, I thought that our Gracie fans would like to hear this unbelievable news! Gracie got a chance to talk to the mailman yesterday, and he told her that she has received more mail than all the other families in the House combined! (FYI- the RMH houses up to 48 families at any given time!) We are both floored and humbled daily by the outpouring of support from both friends and strangers. We love each and every one of you who has brought a smile to our girl's face by taking the time to let her know that she's in your thoughts. Also noteworthy, Gracie has received mail from several foreign countries in addition to the many cards she's gotten from folks here in the USA- notably Thailand, England, Abu Dhabi, Dominican Republic, and probably a few others I've forgotten. That is truly mind-blowing to know that even people on the other side of the world are thinking of her! It's a reminder in these difficult times, in the wake of hate and tragedy, that this world is full of people who truly care for others... and that's our highest calling in life- to love each other. Thank you for loving our sweetheart. Much love to you all, wherever you may be. 

Out of the PICU!

Gracie moved off the PICU unit yesterday afternoon. We are now on the 6th floor! Our room is bigger and so very nice and Gracie is enjoying the big TV, extra space, and cheery lighting. I'll be sure to try to post a picture of our new digs later today.

I'm sorry for not posting sooner, but we have been working very hard since the move. PT has visited us several times and we have been working on transferring from the bed to the wheelchair and bedside potty chair. Gracie has really been enjoying her wheelchair time and she has become a master at using the wheelchair to get around the unit. We've had some trouble being comfortable on the potty chair so she is not very happy when we make that transition.

Her pain control has gotten somewhat better and we are now mostly taking our pain medication orally. I'm not sure if it is quite as effective as the IV med, but we are working on adjusting it to maximize comfort while avoiding too much sedation. She is still pretty grumpy most of the time, but we can hardly blame her considering the painful nature of her procedure and recovery.

Right now, we are focusing on getting her ready to be discharged to the Ronald McDonald House. This will entail addressing her bathroom needs as well as transfers to and from her wheelchair and also into and out of our car. This also requires some tweaking of her pain medication and appropriate timing  for these transfers. Please continue to pray that we get her pain under better control in order to be able to do this. Her cooperation is vital in these processes, and her fear of the associated pain is complicating our efforts.

Our Ortho doc has come by to visit every day, and he has been pleased with her progress so far. Gracie is doing great in his eyes, so we are constantly encouraged by his praise. We are so thankful to have such a caring medical team here at U of M and we cannot praise their efforts enough.

In other news, we have been receiving so much awesome mail from you all and it has really brightened Gracie's mood during these tough days. In addition to her wonderful cards coming in from all over the nation, she has gotten some very thoughtful gifts from special friends as well. We'd like to specially send a shout out to Adelynn and Dancy, our transplant buddy Rylie, and Mrs. Maryanne for sending such fun surprises! We'd also like to shout out to Five Points Elementary back home in Lake City for the huge packet of cards we received yesterday! What a surprise!

We're hoping to be able to start working on our map soon so that we can get a visual of all of the places our many cards have come from. Thank you all for your thoughtfulness in taking time out of your busy lives to send a card and prayer for our sweet girl. She is enduring so much and we appreciate the support from all of you- those of you we know and love, and those of you we have never met but love anyway. Its a constant reminder of how wonderful the people of this world really are. Thank you all for the smiles you have given our baby in her time of trial. We are so very blessed to be touched by each of you.

PICU Princess

Looks like we'll be staying another night here in the PICU. Gracie's pain is better controlled, but she is still not eating much so we cannot change her medication yet. She is off all cardiac medications, and is now just receiving fluids (because her oral intake is so low), pain medication, and anxiety medication. This is another step in the right direction.


She is sleeping better now and taking naps, so we know that we are doing better with her pain management, but we have a long way to go to get her where she needs to be. We are waiting for her appetite to come back right now. She takes a few bites of food and sips of drinks, but she's not really taking anything in amounts enough to count. She is passing lots of gas, so we know that her tummy is trying to get moving, but there is really not much in there to move at the moment. Please pray that Gracie starts feeling hungry soon.


She is doing really well with toe wiggling and minor adjustments to her position. She can stretch her back and shoulders out on her own, however larger position changes cause her a lot of pain and therefore she is terrified of being shifted from side to side. This is necessary, of course, to prevent any kind of skin breakdown from prolonged pressure and decreased blood flow to an area. She doesn't care too much about that yet, just the idea of the pain of the impending movement causes her to panic. We hope to find a good balance soon for her pain control, but her best options will be available once she begins eating.


We're hoping to leave our beloved PICU tomorrow and go explore life on the regular hospital floor. We hear that the digs up there are pretty nice- with much larger rooms, big TVs,  and more fun stuff to do. We'll let you know when we get there. :)


Keep praying and much love to you all.

Hi again from PICU

Gracie continues to do well, although pain control is still a major challenge. We're trying to increase her oral intake so that we can potentially change her pain medication to something more effective, but she is being a bit stubborn and difficult (imagine that!). We're still trying to work with her and hopefully she'll cooperate a little better soon. I'm pretty confident that this is a control issue, and we will just need to change our approach a bit.


In other exciting news, Dr. Walker (the surgeon) visited this morning and is sooooooo pleased with Gracie's progress. She is wiggling her toes and moving very well, so we got a special visit from the Physical Therapist and...... Gracie got out of bed this morning and went for a ride around the unit in a wheelchair! It was a little painful to transfer into the chair, but I think she really enjoyed it once she got settled. We saw a few genuine smiles which have been few and far between over the last few days. It was short-lived and she quickly began feeling pain again, so we transferred her back to bed and gave her a dose of medicine. All in all she was up in the wheelchair for about 30 minutes which is really good. It also tired her out a bit and she's taking a well-deserved nap right now. We're resting up for a game of BINGO over the hospital TV network.

That's all of the news for now... we hope to be able to move to the general floor today, but it might be tomorrow. We'll keep you updated. Keep praying for our girl and for us. We're still in a tough place right now.

PICU living...

So Gracie was extubated this morning with no problems. 😄  She was able to talk immediately and has had no airway difficulty. Our challenge for the day has been pain control. Obviously, Gracie's pain has been pretty bad. We are trying to balance the pain control measures with breathing and blood pressure decreases. It's a difficult line to maneuver, but we are working hard on getting it under control.

Gracie is being a real trooper. She is clearly in pain, and also uncomfortable being stuck in a certain position. We're trying to gently reposition her to avoid any pressure problems, but Gracie's anxiety and pain when being moved is making it more difficult than originally anticipated.  Again, we are working on this to move her as gently as possible. 

Jim and I are also trying to deal with the challenges of being both parents and medical professionals. We're walking a very blurry line but trying to respect the boundaries. It's a pretty tough place to be. Please keep praying for our girl and for us. We are really thankful for all of the good stuff happening, but the tough stuff is still looming and hard to deal with. We are so thankful to be here getting such amazing care, and we're so thankful to have so many people thinking of us and praying for us. Those prayers are working and we are so very grateful!

Surgery successful!!!

Gracie is back in the PICU now and settling in. The surgery went very well and both hips were completed. Thank God! Due to the late hour, they have decided to keep Gracie intubated for tonight, control her pain, keep her comfortable, and extubate her in the morning when there are more people here in case of any emergency.

I hate seeing her with the tube in, but I agree that we want to do everything the safest way possible for our girl. The plan is to take the tube out in the morning when the docs come check on her. 

Thank you all for your prayers and good thoughts tonight. Please keep them coming as our girl still has a long way to go. We are so grateful for everyone's support and love. 

Xoxo

Surgery tomorrow!

Good evening to all from the PICU at the University of Minnesota Masonic Children's Hospital! No worries... we are only here for observation as Gracie gets a medication to help her heart pump more effectively during surgery. Her leaky valves are still leaking (as expected) and her very cautious cardiologist is still playing it safe. Of course, we are completely on board with anything to maximize Gracie's safety during this procedure.


We had a surprise visit from our surgeon tonight, we certainly were not expecting to see him on Memorial Day! He came by to check on Gracie and answer any questions we may still have. Our nurses were certainly surprised to see him here and they said we must be VIPs! :)  We laughed but truthfully, that is one of the reasons we choose to continue come here for treatment. There has never been a moment when we felt like Gracie was not their priority. Even if they've needed to make a change or reschedule, it is always done with utmost care and consideration for the events that follow.


Gracie has a had a good day here in the PICU today. She has been spoiled and pampered all day. From having her toenails painted to eating tons of junk food in bed, she has definitely been enjoying the attention from all of the doctors and nurses who visit. Not to mention having her Mom here to baby her. She took a walk around the unit a little while ago, enjoying a nice stretch of the legs while she's still able to.


Surgery is scheduled for 1:30pm tomorrow (2:30pm eastern time) and Gracie will have to have nothing but clear liquids by mouth after midnight, so we are tempting to keep her up late and stuff her belly in the hopes that she will sleep in a little bit tomorrow. The staff here are on board with this plan and ready to protect Gracie from anyone who tries to bust in wake her up early tomorrow. We'll see if it actually happens.... stay tuned.  :)

Gearing up for another Minnesota Check-up Week!

Hello loyal Gracie fans! Long time no see! Wow, what a year its been!

This year has brought a lot of changes to our family- Mommy's new job at the VA, Gracie's Kindergarten year, and most importantly, the arrival of Gracie's baby brother Hank in January! We have had so much happening and it has all been good.

Gracie had a wonderful Kindergarten year! She loved her teacher and friends, and she did very well. Mommy and Daddy are so proud of all of the hard work she did. :)

She is also working hard at being a wonderful big sister, and her baby brother just adores her. They are wonderful friends and love each other dearly. We'll see how long that lasts. :)

We leave today for our 5 year anniversary check-up week. We are praying for all good news, especially in the areas of Cardiology annd Orthopaedics. Keep Gracie in your thoughts as she endures test after test, and full days of appointments. We are planning to do some fun stuff for the end of the week as reward for all of her hard work.

Stay tuned for our 2013 Minnesota adventure!

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. :)

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.

Monday-

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-

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.

Wednesday-

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.

Thursday-

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.

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. :)

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.

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.

xoxox.

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.