A late night/early morning post on Gracie's "Life Day"

So in 12 hours from now, Gracie will be getting her new stem cells from a donated umbilical cord. She will get a fresh chance at life. We made it this far. I am so glad to be at this moment in time. I am even more glad to stop pumping my poor baby's tiny body full of chemo and work on trying to get her healthy instead.

Of course we have a very long and very tough road ahead. Gracie will get sick, go bald, and really fight for her life as her body struggles to accept these new foreign cells over the coming weeks and months. We will still be confined to this room for at least another month and we will have to really try and keep Gracie comfortable and healthy... and do our best to keep ourselves healthy too. I have to admit it- I am so scared.

On the other hand, I am so hopeful for Gracie and for the chance to give her a real future. A long life full of ups and downs, highs and lows, joys and sorrows. A chance to experience the world, to grow up, to know love and friendship, and the simple pleasures of life- smelling the cleans scent of rain, dancing on her Daddy's feet, eating an ice cream on a hot summer day... These are my hopes for my Gracie.... an ordinary life for an extraordinary girl.

Dear Lord, hear the prayers of my heart and bless my precious baby.

Day O! Gracie's Re-birthday! Transplant Time is 1:00 PM

Hi all. I have to make this brief, but wanted tol let you all know that Gracie's transplant is scheduled for 1:00 PM today! Please pray a little extra when you get a few minutes.

Noni is here now and we are roommates. She stays up way to late, and is keeping me awake with all of her snoring! Kidding mommy. Today, we had a nice little family blessing ceremony to add that little extra that will be needed to ensure the graft takes. We need the new cells to take over in her body, and start to grow and multiply!!! I want everyone to chant "Grow! Grow! Grow! Grow!" in unison. :)

I'm so happy that we get to start counting up tomorrow. I was never very good at subtraction. We love and miss you all!!!

Today is Day -1

Yesterday Gracie was noticeably more worn out than on previous days. It seems like the chemo is catching up to her. She sleeps a lot. When she's awake, she splits time between playing and fussing. I think she might decide to be a dentist when she grows up because the girl LOVES to brush her teeth. She doesn't have teeth yet, but she gets these foam swabs to clean out her mouth a few times per day (these help prevent mouth sores) and she just loves them. It's so cute to watch her gnaw on them. :)

The hospital staff placed her on a medication to make her pee-pee more to get the chemo through a little faster, and also something to keep her blood pressure down. Her blood pressure has been consistently above what they want, although mom and dad say her blood pressure is generally higher that what they want.

The best news of yesterday is that mommy went back to the RMH last night to try to get a few hours of uninterrupted sleep while daddy took the night shift at the hospital with Gracie. I haven't found out how that went yet, but we were hopeful Gracie would not holler too much since she doesn't get hungry these days, so less need for breastfeeding. She still gets her nutrition through an IV.


Today, uncle mack picks up Noni from the airport. We are all really excited about that. Not only will Noni be able substitute for mommy better than anyone else, it's also just really comforting to have your parents around during times like these. Mommy (or Noni) always knows best. Even when you are 35. :)

Well, today will be the last day of chemo. YAY! Tomorrow is transplant day!!!

We love you, and please send us pictures of you and/ or your family for the digital frame. Even if you've never met Gracie, I'm sure she'd love to know you are thinking about her. :)

Day -6

Good Morning! Gracie is sleeping in a bit due to another late night last night so I figured I'd hop on and give a quick update.

So far, the Busulfan hasn't been too tough on Gracie. She has lost a some of her appetite, but she is still nursing some, so Mommy is happy with that. On the downside, the chemo has given her a wicked diaper rash, so diaper changes have become a nightmare. Poor Peanut. We're experimenting with a few different creams and such to see if we can get it managed. Hopefully we will soon. She's still her happy, playful self although she is more tired these days. For the most part, the good outweighs the bad.

Yesterday we had a visit from Occupational Therapy who did a standardized test to see where Gracie was developmentally from their standpoint - motor skills, play, etc. - Gracie tested beyond her age at 12 months+ and boy was there a celebration in room 5! I am so proud of her. She is a total trooper and a pretty smart cookie.

I still hear "MaMa" over and over for most of the day and it still melts my heart each time I hear it, so I guess you can say that Gracie is doing her part to make Mommy's stay in the hospital a bit more tolerable. :) Although I did get a chance to bust out of the jail cell and make a trip back RMH to pick up dinner last night. Oh wow, how easy it is to take advantage of the opportunity to spend time outside. The air was fresh and crisp and the wind was blowing in my face.... if it weren't for my baby trapped back in the room, I might not have come back. :) That brief time out was wonderful. I really look forward to when I get to take the Peanut out with me to enjoy the world we so often take for granted.

Much love and a few new pics.

Gracie enjoying her last dinner at RMH for a while.

Our tiny room on the unit

. How we get our meds.

And where it all goes in.

But still a happy girl!

Ma-Ma! Quick "Day -8" Update

Well, today is Day -8, meaning 8 more days until Gracie gets her new cells. :)

This is uncle Mack. I completely forgot to fill you all in on the speech, occupational, and physical therapy stuff! First off, how great is it that Sarah gets to learn and do all of these therapies that promote child development! She's having fun learning, and it'll be great for future babies! :)

In PT Gracie is learning to stand flat on her feet (she likes her tippy-toes), get up on her knees, and also go from a laying down to a sitting position on her own. She hasn't mastered all of these, but Sarah said she has really made progress.

When I left Minnesota, Gracie was almost clapping on her own. Now she can clap on command. She definitely understands what "no" means, and she has started to smile and shake her head "no" with a big grin on her face when mommy says no... Charming her mother to get her way. I have no idea where she learns these things. :) She's now learning to wave hello and bye bye. :)

Tonight when I was on the phone with Sarah, I heard Gracie yapping in the background as usual. :) Then I heard a very clear and intentional "Ma-Ma!" It was absolutely at the top of my list of the cutest things I've ever heard. Sarah said she's been saying that for a few days. Charmer that Gracie is, she says "ma-ma" all night until 3 AM because she doesn't want to go to sleep. Saying "ma-ma" makes mommy weak in the knees, so I have a feeling Gracie can do whatever she wants. :) Next we're working on some version of dada. :)

As far as how Gracie is doing, it sounds like she's doing great. I believe today is day 2 on Busulfan. She's tolerating it well, but she has lost some of her appetite. Also, clearly her sleep patterns are out of whack. I guess when you are in a room and don't go outside, the concepts of night and day sort of lose meaning. :) Weird, eh? She gets and infusion of Busulfan 4 times per day (every 6 hours), that sort of dictates her internal clock and rhythm.

Oh, Sarah also got to go outside for a bit today, which is great news. Sounds like Gracie did fine while mommy walked down to a coffee shop on the corner. Sarah said the weather is amazing right now, and she enjoyed getting out for a bit.

On the whole, Sarah sounded in much better spirits today. That is a relief for Uncle Mack. Gracie and Jimmy also sound like all is going well for now.

As always, thanks for checking up on Gracie. Gracie's whole family is so appreciative and lucky to have such a wonderful support group and community. Thanks for all of your prayers, comments and messages in the guestbook. Oh, and Sarah loved that her nurses from Shands signed the guestbook. She sais that she left your email addresses in Lake City on accident, and she's glad that you guys found her. :) Thanks again!

Tuesday Night Update

Hi everyone. Uncle Mack again... I just got off of the phone with Sarah so I thought I'd leave an update for you. A play be play of our phone call is below, but if you are pressed for time, here's the readers digest version:

In a nutshell: so far, so good - Gracie is doing well. Looking forward to better continuity across the coming days, and everyone is in need of a little more rest.

1. How is Gracie doing? Gracie is doing much better on the Busulfan than she was doing on Campath. I guess she just tolerates it better. It's the drug that typically makes them not want to eat. Sarah said that her appetite came back and that she eating and nursing like crazy. I guess it may be due to getting off of the Campath. This is also the drug that is supposed to make her lose her hair. Waaaa. :(

Gracie has been needy though, Sarah says. She wants to be held constantly, and Sarah thinks it may have to do with the amount of traffic in the room. Which leads to #2...

2. The BMT unit staff. So far, Sarah says that there are lots of different people coming in and out of the room. Across the next day or so, Sarah and Jimmy get to pick who they want to be their day nurse and their night nurse. I think that's pretty cool. It would certainly boost confidence in their capabilities if you get to pick your nurses. It will also reduce the traffic, and the continuity will allow Gracie to become more familiar with her nurses and ease some of her anxiety.

3. How is Sarah doing? Sarah is tired, a little homesick, and a bit stir-crazy. She essentially sleeps when Gracie sleeps, which sounds like not very often and not for very long. She misses all of you, and she especially enjoyed the church video you all sent. As you certainly know if you've spent much time in a hospital, time passes veeeeerrryyyyyy sllllloooowwwllyyyyy.... Sarah's looking forward to a) getting back to RMH, and then b) getting back to her home in Lake City. There isn't much room in their little hospital cell to get around, and Gracie is pretty demanding these days, so no time to read, chat, blog, etc...

After they get settled and have a dedicated care team, they will probably be better able to schedule time on and off of the unit for fresh air, naps, etc.... When Noni gets here, I'm sure that will help out quite a bit. In the meantime, Sarah said that someone sent her vitamin C that she's taking to keep her immune system strong. So thanks for that too!

4. The room. Uncle Mack tried to pull some strings through his previous employer, where folks have relationships with the hospital administrators, to get them into a bigger room. Unfortunately, it didn't work out. We do have friends in high places, but they happen to be at the wrong hospital... Oh well. I suppose it won't hurt for the staff to know that Gracie is a VIP in some Fairview administrator's eyes.

As it turns out, my contact's contact runs the oncology program at a different hospital that is also part of the Fairview system, but doubtful that person has the influence at UMinn Fairview Hospital. On the bright side, their room has a Nintendo Wii in it (Wiiiii want to play - for those of you who have seen the commercial), and Sarah says they play Wii tennis and golf and other games when they can. She says its lots of fun and allows she and Jimmy to get up and move around a little bit. I guess Uncle Mack will have to buy them a Wii when they go back to Lake City...

Sarah and Jimmy are going to upload some recent pictures soon, and Sarah will leave a mommy update sometime in the next few days when she get a few minutes. I think that's pretty much it for now. They really miss everyone, and thank you again for your warm wishes, thoughts, and prayers.

Monday Night Update

This is Uncle Mack. I spoke to Sarah a little while ago, and she sounded pretty good. She said Gracie seems fairly normal, playing and all. She also ate and entire thing of sweet potatoes today. :) The switched her antibiotic from Vancomycin to a less intense drug. It caused her to break out in a rash, but Sarah said they took care of it. They have also put her on a drug to control her blood pressure. Again, they say this is all within the bounds of "normal." It's just a little jarring to think about.

I just love this picture!

Tomorrow, she starts her first real chemo drug, Busulfan at 4:00 AM!!! Ugh! Please send Gracie your thoughts and prayers, as we hope these drugs do what they are supposed to do, reduce her immune system to a point that it won't attack the new cells that are introduced to her body during the transplant. Essentially, we want the drugs to weaken her so that the new cells will win the "battle" over which cells will control of her body. W are rooting for the new, healthy cells. :)

Again, Sarah sounded pretty good. She's not real happy with her room assignment - it's teeny tiny. It won't fit a bed and a crib at the same time. So far Gracie won't sleep in a crib, so Sarah sleeps with her. But, the hospital will not allow them to sleep in a bed unless it has rails... Anyway, the point is that the room is just too small for much stuff. From the sound of it (haven't seen it yet) it's about the size of 1/2 of a small hotel room. Cramped quarters for living the next 6+ weeks! Ugh... We might see if we can change that. We'll keep you posted.

Thanks again for your thoughts and prayers. Keep em coming!

Day -10

Today is our 3rd day of Campath, and thankfully, Gracie seems to be tolerating it much better. Her fever has gone away and she is much more playful than she was on Saturday. They started her on TPN last night which is basically all the nutrition she needs. She is still eating and nursing, which is encouraged, but due to the fact that she has had some vomiting and also they can't tell how much breastmilk she's getting, they went ahead and gave her the nutrition just for safety's sake.
This morning they drew blood at 4 am (this happens everyday) and both her hemoglobin and potassium were low so Gracie has had some red blood cells and some extra poatssium today so far. She's looking pretty good (a little pale because of the low hemolobin level) and doing well according to the doctors who visitied us about an hour ago. She seems to feel better and has been playing and flirting with all of her nurses today.
A couple of nice ladies from Speech Therapy and Physical Therapy came by this morning, and unfortunately Gracie was still drowsy from Benadryl and not interested in talking or playing much. I went ahead and asked that they start coming to visit in the afternoons when Gracie is in her prime, so I am really looking forward to seeing what all we can do to help Gracie along developmentally.

Anyway, so far so good. Gracie starts Busulfan tomorrow.

By the way, Rylie is down the hall from us and seems to be doing well. Also, Chance's mom had her new baby yesterday! Cooper Allen was born at 8:30 am yesterday morning. Congratulations Tracie and Ben!!!

Hello from 5D- the Transplant Unit

So Gracie was admitted yesterday and we are settled into our little room. Little being the operative word. Yikes. 1 or 2 months in HERE? I think I'll need the walls padded by Monday.

Anyway, last night Gracie made a valiant effort to sleep in the crib here, but by 3 am she was awake and not interested in sleeping anywhere without Mommy. So the nurses removed her crib and brought in a hospital bed for the 2 of us to share. Hopefully Gracie will be ready to try crib sleeping again soon. Mommy would sure like to have a bed of her own now. :)

Ok, so lets talk about today. Today is Day -12 and she started Campath today, which is an immune suppressing drug. Side affects: Fever, rash, and general yuckiness. She just registered a temp of 102.1 and has been vomiting up about half of everything she takes in. :( No rash so far. She just choked down a dose of Tylenol to fight the fever, and they'll be sending her for a chest x-ray to look for any infection and starting her on IV antibiotics in a few minutes. Those are standard procedure for fever spikes so we are not really worried that there's really an infection, just being cautious and following protocol. I hate that she's feeling bad already though. It just breaks my heart for her. I hope this day doesn't continue to drag like it has so far and I hope for a better night tonight as well.

The Schedule...

Here is Gracie's tentative schedule for the next couple of weeks. This is how it will go if she is admitted on Friday (as we are hoping!) You see the big day is on May 8th!

Sun	Mon	Tue	Wed	Thu	Fri	Sat
			April 23	24 ERT #11	25 Admitted to BMT	26 Begin Campath
27 Campath	28 Campath	29 Begin Busulfan	30 Busulfan	May 1 Busulfan	2 Busulfan	3 No Chemo
4 Begin Cytoxan	5 Cytoxan	6 Cytoxan	7 Cytoxan	8 Transplant Day	9 Day +1	10 Day +2

Campath is an antibody that sticks to immune cells, not an actual chemotherapy drug. This is a preparatory step for chemo. Busulfan will be her first real chemo drug (this is what makes your hair fall out). Cytoxan is the second chemo drug. We heard more info on them, but I don't remember them right now. Sorry! What I can tell you is that the doctors tell us that little kids actually tolerate chemo very well, which was a relief to hear.

On transplant day, Gracie will get an infusion from her umbilical cord blood donor, full of lots and lots of stem cells that will infiltrate the bone marrow, and ultimately help Gracie independently produce the enzyme she is missing. It will take a while for this to happen, so she will continue weekly ERT (enzyme replacement therapy) infusions until she does. More than any other time, she will need your thoughts and prayers during this part of the process.

You'll notice that after Transplant day, we start a new counting method and essentially a new calendar. This calendar "Day +1, Day +2, ..." refers to the number of days since Gracie was given a new chance at life. Thanks so much for all of your prayers and words of support.

Monday News - A Couple of Extra Days

Before we get into Gracie news, I just wanted to let everyone know that Rylie's insurance company agreed to cover her transplant today! We are so excited for her and her family. I know that they are really ready to get things underway. Gracie will be so happy to have a partner to go through this process with, I'm sure. Thanks for all of the prayers!

Gracie met with Dr. Orchard this morning, and Dr. Whitley this afternoon. Since Gracie is fighting off a tiny cold and because she still has a little bit of a rash (although it's really improving), the collective decision was to delay Gracie's admission until Thursday or Friday. Once admitted she will start the chemotherapy process.

While everyone is excited to get started, today all of this became so real (to me). It gets more real each time I walk into the hospital. By the end of the week our little Gracie will be starting chemo!!! ACK!

We walked through her treatment regimen over the next 30 days or so. So much going on! Antibodies, immune suppressors, other chemo drugs. Then there were all of the meds to address the side effects of the treatments. Anti-siezure meds, blood pressure medications, allergy meds, steroids, anti-fungals, pain management medications, diuretics, to name a few . My head was spinning. Poor Sarah had a glaze in her eyes and a look on her face that was probably no unlike when Gracie was first diagnosed. She's a tough one though. She grew up with two very mean and manipulative older brothers and sisters. Besides, we are keeping our eyes focused on the big prize - a healthy baby with a long life ahead of her.

In a week or two, these postings will be full of numbers as well as commentary. There are a lot of indicators that collectively give us a picture of Gracie's progress. We're looking at white blood cell counts, hemoglobin, platelet counts, neutrophils and lymphocytes... Before we throw too many numbers at you, we'll have a description of what they are and why they are important.

After the treatment regimen, Sarah and Jimmy had to sit through a long discussion of all of the things that could go wrong with this procedure. It was painful for me to hear, so I know it was really hard for them. The doctors have to inform the families of all of these things. It 's scary, but its so important that we focus on the bigger picture, and what will benefit Gracie most over the long haul. To make things harder, Sarah and Jim had to start signing all of these consent papers to allow the university to use her data for research purposes.

I'm sure there is more to tell, but that's all I can think of right now. Plus, Sarah just called, and Wyatt's family is going to Sally's - a restaurant/bar in the area for dinner, and invited us to tag along.

Again, our spirits are high, and the over-arching feeling is one of nervous excitement. Everyone is focused now on staying healthy and making sure Gracie is in peak condition when she arrives at the hospital to be admitted. She is a fighter, and we just need to give her all of the time and tools we can to make sure she has a competitive advantage.

Keep us in your prayers!

At home at the RMH

So as Uncle Mack told you, we have settled in here at the Ronald McDonald House (RMH) and we are really enjoying it here. Everyone here is so nice and the facility is absolutely beautiful. There are really nice kitchen areas where we can cook anything we want, and even better, there are volunteers who come in everyday and make dinners for us... and brunch on the weekends too! Its really so nice to not have to worry about making dinner or even deciding where to go for dinner. Just go downstairs and its waiting for you. :) At such a scary time in our lives, its a beautiful thing to see the many kindnesses of strangers. Often when I am standing in line to get my food, I have to fight back the tears as I watch these people rush to serve everyone and smile and talk to all of the children despite their masks and bald heads.

It really does feel good to be here.

Currently, we're in a smaller hotel sized room. We have a minifridge and our own bathroom, but it definately feels small. We're on the fast track to a suite though, due to the length of time we expect to stay here. I'm looking forward to getting a bit more room to move around.

Things have been especially small-feeling around here due to the fact that Gracie has a cold. We've been trying to keep her here in our room instead of taking her downstairs around all of the immuno-suppressed kids, so we've been getting our meals in take-out boxes and staying upstairs a lot . :( Not much fun for Mommy and Daddy. We're hoping that the antibiotic that Gracie is taking for her skin inflammation might do a little work on the cold as well.

Uncle Mack brought Gracie a new Baby Einstein jumpy chair and she has been enjoying it as much as she can considering how sick she is. She really missed being able to jump and she just loves all of the cool new toys on it. Thanks Uncle Mack!

We meet with Dr. Orchard tomorrow morning first thing to check her suitability for admission on Tuesday. I really hope she'll be feeling better and we won't have to delay. Please pray that we beat this cold and the skin infection pretty quick.

More to come later. :)

Itchy and Scratchy

Gracie is sacked out right now. A cute little monkey-chuck. She didn't sleep well last night so he was very tired today. Mom is knitting on the bed. Daddy is playing on the computer. And Uncle Mack is playing on his computer too. Two laptops on the same table. So weird to think of how fast technology advances...

Today was all about Gracie's central line. Ever since the last trip to Gainesville, Gracie has been scratching around her line. Sarah and Jimmy noticed some ulceration around the area which is indicative of some sort of infection. Docs on Sunday thought it was a fungal infection and prescribed an anti-fungal powder. Well, they were wrong. Today when we removed the bandage, it looked so uncomfortable. It was clear that it was itchy. Poor little thing. It was also worse than it was earlier in the week.

The good news is that the line itself seems fine. The infection is just in the skin around the line and all under the bandage. Seems that part of the problem is that the skin around the line has been covered with a dressing that doesn't breathe for 2 months. The skin is just breaking down a little bit. So the started using a dressing that breathes. The Nurse Practitioner today prescribed an oral antibiotic to try to take care of it. Now the challenge is to keep her little paws away from the line. She tries to get to it all the time. Keeps mom and dad on their toes. :)

Tonight there are volunteers at RMH that are cooking dinner. I was just downstairs and it smells yummy. Smells like ham and mac & cheese. MMMM. We go down and grubb at 5:30 (central time).

Oh! I got to see Chance today. He's so cute. He has beautiful eyes. He was with is dad at the bone marrow transplant unit (BMT) and was wearing his little mask, like Gracie will be wearing soon. Sounds like all is going very well for him. We're very happy for him and his family. Please keep him in your thoughts and prayers too. :)

The BMT was full of folks of all ages wearing little masks. It was both sad and very happy. Sad to see so many little kids who are sick, but exciting that they all have hope. Definitely hit uncle mack hard though. I'm gonna have to toughen up a little if I want to be the supportive big bro. :)

Quick Check-In

Hi all. Just wanted to leave a quick message to let you know everything is going great here. Gracie had ERT yesterday, and she did very well. Sarah, Jimmy, and Gracie are checked into the Ronald McDonald House. It's a really nice place. I was shocked at how clean and comfortable it is. I'll get a better look today and report more. Funny thing is, they have those crappy sleep number beds that we had at the Radisson. :)

I can't tell you how great Gracie looks. I has only bee 8 weeks since I've seen her, but the changes are amazing! Her coordination has improved 1000%. She babbles and she just seems so happy. She's starting to be mobile! If she wants something bad enough, she'll wiggle and squirm her way over to it. It's so cool! :)

Today is a pretty light day for Gracie. We have a line consultation this morning, and then we're planning to check in with Dr. Tolar, our surgeon, if we get a chance.

Gotta get ready to go, but I just wanted to drop a quick posting to let you know we are all doing well. I'll write more later on. Bye!

Hit the ground running...

Yup, thats basically what we have done since arriving in Minneapolis on Saturday evening. While we expected to have Sunday to relax and settle in, it turned out that we needed to go into the clinic so that Gracie could have her central line site looked at. Over the past few days it has become increasingly more irritating to her so she has been scratching and pulling at it all the time. It looks like she might have some sort of a fungal infection at the site and it seems that the meds are working because its looking better and doesn't seem as itchy. Yay! And in between dressing changes we've been given the ok to give Gracie a real bath! WOOOOHOOOO! Her first in 2 months. I am so excited for her. We'll probably do that in an hour or so.

Anyway, lets do a rundown report of our appointments from yesterday.

1. Dr. Orchard - just a quick physical and chat with him. He said she looks fantastic and he doesn't expect any delays when it comes to admission and transplant so that was good news. If all continues to go well, Gracie will be admitted to the BMT unit next Tuesday- the 22nd. I aso should mention that Gracie spent a lot of time flirting with Dr. Orchard which he enjoyed immensely.

2. Pumonary- Just a quick listen and chat with Dr. Philips who said that Gracie looks and sounds great and there's no reason not to go ahead with transplant.

3. Echo/Cardiology - Gracie had another echo done and then we met with Dr. Braunlin to go over the results. It turns out that the ERT has done wonders for Gracie's heart issues. Her septal walls have shrunken to normal size and her aortic and mitral valves have gotten smaller as well. Her leakage from her mitral valve has also diminished a little, which is a surprise but we're certainly not complaining. :) Dr. Braunlin was really really happy to see such huge improvements and she gave us a green light for transplant.

4. Neurology - Dr. Charnas was very impressed with Gracie and in fact, he asked if she was the same baby that he had seen 2 months ago! :) He feels that she is doing well developmentally and that the ERT has definately helped her make many vast improvements neurologically.

So, a clean sweep yesterday... straight A's as far as I'm concerned.

Today we just had one consult - NeuroPsychology with Dr. Kendra Bjoraker. Dr. Kendra was also amazed to see Gracie's progress and all of the ways she's changed. She did a little bit of testing and we'll get the official scores tomorrow, but Dr. Kendra said that in a mere 2 months, Gracie has improved her scores a LOT. She kept saying over and over how amazing our Gracie was doing. :) :) :) Sounds like an A+ from Dr. Kendra! Woot!

After NeuroPsych we had an EKG and an Xray done. Daddy says that the EKG was beautiful and we should know about the Xray tomorrow when we meet with Teresa, the Nurse Coordinator.

In other news, we met 2 other Hurler babies yesterday! We met Chance, a 1 year old who I have written about before, and Rylie, a 19 month old redheaded cutie who has been waiting for transpant for 5 weeks while her parents and the folks here fight with their insurance company. Please keep Rylie and her parents in your prayers. I can't imagine what they are going through with that situation. :( Chance looks to be doing very well. He's been released back to RMH and is coming in for checkups every few days. Go Chance! I'm looking forward to getting over the RMH and getting to know these families better. Hopefully it won't be too much longer.

Ok, so Gracie and I are going to take a rest and watch some Mr. Rogers and then we'll have a bath. More later.

Safe and Sound in Minneapolis

Hi all. This is Uncle Mack. I just wanted to pass along the news that Sarah, Jimmy, and Gracie are safe and sound in Minneapolis. They arrived on Saturday, and it still feels like winter there. :) They will be staying at the Radisson right by the hospital until a room opens for the in the Ronald McDonald House (RMH). RMH folks said there are a handful of people on the list ahead of them, but that hopefully it will only be a couple of days. A couple of days is no problem, since they were able to get a pretty good rate at the Radisson through hotwire.com. Also, I'll be there on Wed. and they will shack up with me if they still aren't in RMH.

Unfortunately they had to go to the clinic yesterday because Gracie stared fussing with her central line and ripping off her bandage. The docs looked at the area and prescribed some anti-fungal medication, that will hopefully take care of whatever was bothering her.

Today is a big day. Gracie's first day of work-up pre-procedure. Lots of appointments. These are really important exams and consults. They will hopefully a) show impact of the initial ERT treatments on disease progression (or lack thereof - hopefully) since her last visit in Feb; and b) serve as a baseline for measuring Gracie's progress after the cord blood stem cell transplant.

Here is Gracie's itinerary today:

• 9:00 - Review calendar and labs
• 9:30 - Meet with Dr. Orchard - History and Physical Exam (he is the first physician we contacted, and the primary investigator over Gracie's clinical trial)
• 11:00 - Echo - I think this is for an echocardiogram - which is some sort of heart imaging procedure (you may recall, Gracie already had minor valve issues when she had this exam in February)
• 11:30 - Pulmonary Consult
• 1:30 - Cardiology - Dr. Braunlin
• 4:30 - Neurology consult with Dr. Charnas (Another of the key physicians running the clinical trial)

Uncle Mack will be driving from Chicago to Minneapolis on Wednesday to tag along on hospital / doctor visits and offer whatever support possible. I can't wait to see my baby sister. :)