Saturday, July 2, 2016

Moving right along...


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.

Sunday, June 26, 2016

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.

Friday, June 17, 2016

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. 

Tuesday, June 7, 2016


Gracie is in the process of being discharged from the hospital to the RMH!!! Yaaaay! Right now they are waiting for her wheelchair to arrive so that she can get around as she is not yet able to bear any weight. She has worked so hard and I really could not be prouder of her, even when she's crabby and stubborn. Jim has also been working hard doing all of the heavy lifting and transferring her from her bed to the potty or wheelchair. He's also learned how to gently exercise her legs and feet to prevent any problems or muscle contractures for when she starts bearing weight and walking. 😀

She is still in pain, but it is manageable at this time, and she has long periods of happy perkiness, especially when she reads through the MASSIVE amounts of mail she has received. Thank you all so very much for all of the sweet cards and gifts that she has been receiving. They bring such smiles to her face and she reads each and every one. It is so humbling to see how much people care by taking the time to write our precious girl. I can honestly tell you that she lights up when the mail is brought to her. A few shout-outs to our friends at Westside for all of the great cards, also to 2nd grade class in Linden,AL for the beautiful handmade cards from so many thoughtful students. Thanks especially to the crew at Little Red Schoolhouse in Lake City for the many sweet cards (including from little brother Hank), and to everyone else who have sent cards and gifts. We are so very blessed and touched by your kindness. 

God is so good. He has provided for our every need so far. Then to have so much prayerful support from so many people is just icing on the cake. I just can't say thank you enough. We are beyond grateful to each and every person who has thought of us and prayed for us. There is so much more to go as Gracie will remain in Minnesota to be followed by her doctors for at least 6 more weeks. Please continue to  keep her and the rest of us in your prayers as we still have quite a ways to go from here.

I am presently on my way home from Minneapolis, leaving half my heart there. This transition is difficult as I worry about Gracie and her lack of mobility and the pressures on Jim to constantly monitor her condition along with lifting, transferring, keeping her pain under control, monitoring her temp and incisions for signs of infection, and above all, keeping her safe. He is an amazing dad and caregiver, but I know from experience that the stress and strain can take its toll on just one person. Please pray that this SuperDad retains his super-strength throughout this long recovery process. And pray for me as I continue to miss and worry for them from afar. Thankfully, Hank has done well so far and I am so excited to see him tomorrow. Please also keep him in your prayers as he shuttles back and forth between home and his grandparents'. While he seems to be handling it fine, I know that he misses his dad and sister as much as they desperately miss him.

So all in all, great things are happening and we are so happy to report that, but it's difficult for our family to be separated. Stress is high and so are our emotions. Gracie is strong, but still so fragile. Mommy is happy she is doing well, and sad to be away from her. Daddy is amazing, but very tired. Hank is busy being Hank, and we're thankful that the disruption to his routine is having little effect on him so far. We're making it, but we'll all be glad when Gracie is able to come home and we'll be together again. Until then, please keep us firmly in your prayers. Much love.

Saturday, June 4, 2016

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.

Thursday, June 2, 2016

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.

Wednesday, June 1, 2016

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. 


Tuesday, May 31, 2016

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.  :)

Tuesday, May 24, 2016


Gracie's hip surgery has been rescheduled for Tuesday 5/31. We are thankful for all of the prayers and cards she has received so far. :)  She is enjoying this extended break and is filling her days with fun and play while she still can. Please continue to keep us all in your prayers as we prepare for the surgery.
I am missing my girl so very much and I am hoping to head to Minneapolis over the weekend. I am still working on rebooking my flight, so please pray that I can do so without too much additional cost.

Much love.

Monday, May 23, 2016

Surgery Postponed...

...for a few days.

I wanted to take a moment to update everyone on Gracie's surgery. Due to some ongoing cardiac issues (Gracie has had leaky heart valves since birth), Gracie's cardiologist has requested that her surgery be moved to the large university children's hospital instead of the specialty hospital so that the cardiac team can be standing by in case any unforseen problems should arise.

*Let me just stop here and say that no issues are expected and we anticipate an uneventful procedure. However, Dr. Braunlin wants to err on the side of caution, and naturally, we do too. So it was agreed that the best course of action at this time would be to change the location of the surgery.*

This all was decided around 7pm tonight, and I was notified that the surgery was canceled as I was entering JAX airport for my flight to Minneapolis. As of right now, we are thinking that the surgery will be scheduled for next week... we hope to know for sure by tomorrow. I postponed my flight (thank you for the full refund, Ana from Southwest!), and headed back home to Lake City in tears... disappointed that I would not kiss my baby girl tonight/tomorrow.

Gracie was mildly disappointed that her mom was not coming tonight, but she was also very happy to have a short reprieve from the impeding surgery meaning more time to play, mingle, visit, and explore the Ronald Mc Donald House with new friends, and also Minneapolis with her dad. Shout out to the RMH who have provided Gracie and her dad with 2 tickets to the Minnesota Twins game Wednesday night!!

However, there is a silent and unexpected hero in this story.  I waited for the bus to take me back to the parking lot, and when it arrived, it was driven by the same man who had dropped me off about 20 minutes earlier. He gave me a strange look when he saw me again, and as he helped me with my bag he looked at me sympathetically and said, "Did you miss your flight or was it canceled?" I told him that neither had happened, but that my daughter's surgery had just been postponed and I would need to reschedule my flight so that I could be there with her. He looked at me with wide eyes and said, "Thank God you found out BEFORE you boarded that flight!"  I realized that he was right, and imagined how I would feel if I learned about this after I had arrived in Minneapolis!  Thank God for the caring and conscientious nature of Gracie's team of physicians and their determination to ensure the best and safest care for Gracie, despite the major inconvenience it surely caused. Thank God for the timing of this news and how the physicians and nurses spent their extra time after-hours to determine this course of action. And thank God that the news reached me (through the persistence of my sweet husband) before I checked my suitcase and boarded the plane. And thank God for Brian, JIA bus driver, for reminding me about the silver lining of my dark cloud this evening. I needed help looking for the bright side, and he did just that.

So friends, stay tuned for an update on when the surgery will be! Also thank you to all who are participating and sharing the Get Well Cards for Gracie page. She and her dad bought a map of the world tonight along with some push pins. She has no idea why yet... :)

I'll post an update soon... please continue to keep us in your prayers.

Sunday, May 15, 2016

Almost 2 years...

...has passed since my last post here. With the connections and ease of Facebook, its difficult to remember to post here. I apologize to those who still come here looking for updates and information.

Happy MPS Awareness Day! May 15th is designated MPS Awareness Day every year! To celebrate, show support for our kids, and raise awareness of MPS we wear #PURPLE! I hope all of our friends have purple on today!

Gracie is now 8 years post-Stem cell transplant for Hurler's Syndrome. Thankfully her engraftment has remained at 100% donor cells after all of these years. We still think of and pray for the anonymous donor mom and child whose umbilical cord cells have flourished in Gracie's little body, giving her a new chance at life.

During the past few years our focus has shifted from saving and extending her lifespan to ensuring the highest quality of life possible despite the damage the Hurler's has done to her body. At age 4, she had double carpal tunnel release of both wrists and 2 trigger digits released from her right hand. So far, her hands have remained stable although she does seem to get tired if her school assignments require extensive writing. Our current issue centers around her hips. Gracie has malformations of both hip balls and sockets caused by her disease. This issue is very common in children with Hurler's and so this is a problem we have been monitoring for quite some time. Over the last year or so, we have noticed Gracie becoming more stiff after sitting for extended periods and after sitting indian-style especially. We have also seen changes in her gait, indicative of some potentially serious threats to her mobility. During her orthopedic appointment last summer, it was discovered that there has been some movement of the balls of her femurs out from the hip sockets. The malformations of the sockets do not hold the balls in properly which is why this is happening. As you can imagine, this present condition can eventually cause severe and debilitating pain, dislocations, and an inability to walk at all. Obviously, we must address this problem soon.

On May 25th, Gracie will undergo surgery to repair these issues. This surgery will very long, very extensive, and carries some very significant risks. Hurler children are notoriously difficult to intubate and are prone to airway swelling if they have breathing tubes placed. Gracie has had numerous surgeries in her short life, and thankfully (knock on wood), her airway has never seemed to be a problem. However, we still have some concern since she has not been under anesthesia for several years, and has seemed to have had more trouble with her asthma more recently. There is also a small chance that a spinal cord accident can occur during the surgery which could cause loss of sensation and paralysis. This has happened only a handful of times, and most recently to a child only a few weeks ago, so we are definitely feeling some stress about this upcoming procedure.

We are praying that Gracie will be able to have both hips done at the same time, utilizing 2 very skilled surgeons, however, we will not know for sure if this will happen until the surgery has started and the extent of her damage has been assessed. Of course, we would like to do them both together to avoid at least 2 additional surgeries. The first surgery is to repair the hips, and the second would be within a year or 2 to remove the corrective instrumentation. Of we have to do each hip separately, we will go from having 2 surgeries to 4, and Gracie's quality of life over the next few years will be affected tremendously by doubling both surgery and recovery time frames.

As I am writing this, Gracie and her dad are on Day 3 of their long journey from Florida to Minneapolis by car. I expect them to make it to the Twin Cities sometime this afternoon. Starting Monday, Gracie will begin her regular yearly follow-up appointments. She will undergo many tests, MRIs, and see all of her specialist physicians who have monitored her care since before her transplant. She will also begin work-ups for her surgery. While she is very much looking forward to seeing her wonderful doctors again, she is getting very anxious about the upcoming surgery. We have attempted to be very honest with her, explaining that she will be in pain, and unable to walk or do things for herself for a while and that she will have to work very hard to get better, but that this will hopefully make her able to get around much more easily and without pain. She is the toughest and bravest girl in the world and we have every confidence that she will once again give Hurler's Syndrome a good kick square in the teeth before she continues to dance her way through life with smiles and joy like she always does.

We are so thankful for our family and friends, far and near, who continue to support, pray for, and love our sweet Gracie. Please also pray for all of us through what will be yet another challenging adventure, for Gracie's baby brother Hank who misses his sister very much and will likely not see her for at least a month, for Dr. Walker- Gracie's orthopedic surgeon, for Jim (Gracie's dad) who will be with her through the entire difficult process of recovery in a place far from home, and for me- the Mommy who will be home working to maintain the health insurance and heartsick to be away from my baby when she needs me. I will be flying up for the surgery itself and staying a few days afterward, but I am not sure when I will be able to return for another visit. However, I am truly thankful for my job and the wonderful people I work with who are so supportive of me.

We'll try our best to keep the blog updated for you to follow along. Keep an eye on Facebook for updates as well. Much love to you all.