The last few days have been very emotional for all of Grace's family and friends. Grace's visitation at Mueller-Bies Funeral Home was held Friday. Many people came to say goodbye and to celebrate the wonderful, yet short, life Grace led. It was heartwarming to know that she touched so many people. Saturday morning, after a short service, we buried Grace at Roselawn Cemetery in Roseville, MN. The site is perfect, Grace is nestled between two crab apple trees and near a wall of lilac bushes. While we know Grace is now in the best of hands, it was still very hard to walk away from Grace that cold morning. Melanie, Jason, and Cole are doing the best they can right now. Cole doesn't completely understand what has happened yet, but we will be there for him when he does. It sounds like Mel and Jason are both planning to return to work this week. Hopefully, that will go well for both of them. Please continue to keep Melanie, Jason, and Cole in your prayers.
Melanie and Jason would like to thank the team at Children's Hospital Pain and Palliative Care Program. Matt Lodahl, in particular, was invaluable. Matt was the gentle nurse of whom we spoke so warmly. Without his wisdom, knowledge, and compassion this whole journey might have gone very differently. Thank you...I imagine that to help a sick child die with love and dignity is the most difficult, yet blessed of all professions.
Lastly, we want to let everyone know that Grace's Benefit and Silent Auction will still be held on Sunday, November 16th from 4-8pm at Sweeney's Saloon in St. Paul. Grace's family would like to use this oppertunity to celebrate Grace's life and raise money for the important work Children's Hospital does. More details can be found at www.gracejoystrand.com.
There will be no more CaringBridge entries. We will keep the www.gracejoystrand.com site for a bit longer. Hopefully, you will also hear from us next fall when we hold the 2nd Annual Race for Grace 5K. Thank you so much for following the story of this baby girl. In her brief life she was loved so much by so many... Thank you all!
Grace died early this morning in Melanie's arms. We are not sure if she was in any pain, but we are certain that she is now at peace. While we are all very sad that Grace will no longer be in our lives physically, we also know that no length of time or absence of body will erase her from our hearts.
Rest in peace Grace. You have been loved from the moment you were born and that love will never wane.
Grace's visitation will be held Friday, November 7 from 4:00-8:00pm at Mueller-Bies Funeral Home, 2130 North Dale Street, Roseville, MN 55113. Private burial will take place the following morning. An obituary will appear in the St. Paul Pioneer Press November 6.
Grace's family has requested that in lieu of flowers, please send donations in Grace's memory to the Children's Hospitals and Clinics of MN - Pain and Palliative Care Program, Children's Hospital Foundation, 2525 Chicago Avenue South, Minneapolis, MN 55404.
Grace is still hanging in there! Her condition, however, remains the same. Grace's color is poor, her breathing is shallow and now more irregular, she is still not moving or crying. We did finally get Grace to swallow her meds, which is good, at least we don't think she is in any pain. We also continue to do crazy things with Grace! Since today is election day, Grace, Melanie, Jason, Cole, Aunt Mary, and I (Kristen) celebrated Independence Day. Grace was born the day after July 4th...and missed all the fun. We think we have now celebrated all the holidays! Grace also had the privilege of voting for President of the United States (at home, with a sample ballot...don't worry no voter fraud here!). Our family will debate for years who she voted for...McCain or Obama...
Also, somewhat ironically...we also finally settled on place and time for Grace's Silent Auction. It will be held at Sweeney's in St. Paul on Sunday, November 16 from 4:00-8:00pm. There will be an auction, food, cash bar, and good memories!
Today was another rough day with Grace. Grace has been very quiet and weak since last week when she stopped eating, but today Grace took another turn for the worse. About noon, Melanie noticed that Grace's respirations were fast, but shallow, and her limbs suddenly became flaccid. Grace's eyes for the most part have also been fixed forward, which is unusual for her. Normally, her eyes drift a bit and she will look towards sounds and feelings. Later when we took Grace's pulse it was only 48 beats per minute, this is very low for an infant (even low for an adult). Grace's body temp has also been very low and her fingers and toes seem a little blue. None of these are very good signs. Melanie also hasn't been able to get Grace to swallow her morphine, so we are not sure if she is in any pain. While she does not appear to be, with how weak Grace is, I am not sure she'd be able to "tell" us that she is feeling pain. We will continue to update you as things develop, but for now Grace continues to be held and loved by her family. We think the end may be near for Grace, but we have thought this before and been wrong. We are all following Grace's lead at this point...and we are as prepared as we can be for whatever she decides to do.
Over the last week Grace's health has continued to decline. Grace has completely stopped sucking on the bottle, so she isn't receiving much for nutrition or hydration, although Mel and Jason continue to try to encourage her to eat whenever possible. Some days, sadly, Grace doesn't eat at all. A few days ago Mel had the idea to try a little applesauce. At first, we were somewhat encouraged because Grace seemed to enjoy the taste and was still readily chewing and swallowing. This, unfortunately, appeared to cause a bit of a stomach-ache, so no more applesauce. Grace's appearance has also become very distressing...she is much thinner, pale, and very weak. However, we are all still hanging in there with Grace. She is being held nearly constantly, visited by family and friends often, and is showered with love and affection always. Please continue to keep Melanie, Jason, and Cole in your hearts. I think they will need all of the love you can send them over the next few weeks...
Bad news today. Grace's condition has been continuously declining over the last 2 weeks. She has been eating less and less, down to just an ounce or two a day. Grace's mood is either very crabby or very lethargic. She has also begun to lose weight. Additionally, Grace's head circumference has increased dramatically over the last 2 weeks. Grace's hospice nurse noted that this generally indicates an increase in pressure inside Grace's skull. We are all still hopeful that Grace will rebound, she has before, but we also do not wish her to continue to be in pain.
Grace is also contantly surrounded by loved ones at all times. Today, Jason was with Grace and Cole while Melanie was at work, then Aunt Sharon stopped by for a visit. The other day Grace finally met Cousin Shannon for the first time. Shannon came to visit Grace all the way from California...this, of course, warranted an impromptu holiday celebration. We went with a Cinco de Mayo party...we even found a pinata.
After a rough couple of days, Grace is now more comfortable on her new medication. On Friday, Melanie brought Grace to meet the hospice team at Children's. While there they discussed some of the decisions Mel and Jason have to make regarding Grace's care. They also adjusted the dose of Grace's new medication. After the appointment, Melanie and Grace picked me (Kristen) up to go get our race information for the Twin Cities 5K. Afterwards, I went to Mel's place to make dinner, then relax before the big event. Grace slept very soundly all night Friday, only briefly waking once to be cuddled. The next morning Aunt Sharon came over to be on baby duty during the race. We got Grace all bundled up to watch the fun. The race was lots of fun! Grace, of course, slept through most of it. Only a few of the Team Grace members ran the Twin Cities 5K, but Melanie finished in 35:57 (a new personal record), Sarah Garvey in 31:24, Tamie Bradbury in 38:57, Paul Makens finished in 28:54 (1st 5K!!), and I brought up the rear in 40:47. We all had a great time...and it was nice to see Grace at the finish line (especially for Melanie, I think). By the time we were done, Melanie's parents had returned for another visit from Colorado. We all meet for a late breakfast at the Louisiana Cafe. Cole was very excited to see Grandma Judy and Grandpa Bill! Later that day Grace and Cole went over to Jason's house to visit some more family. It sounded like they had a very nice quiet evening. Sunday morning, Grace went to breakfast with Melanie, Jason, and Cole then meet up with me to go see the marathon runners pass Summit Ave. We are all really inspired watching people on their 24th mile. The rest of the day was low key, cleaning the house, Melanie and Grace took a nap, Grandma Judy and Grandpa Bill took Cole for a drive then to go swimming, then they all meet up for dinner at Fudruckers. It was Grace's 3-month birthday after all!!
Hello friends!! As usual, Grace has been very busy these last two weeks! Grace went back to the Science Museum, she had to take on Cole, Jason, and Melanie is a game of mini golf. Everyone also had lots of fun going through the maze and panning for jewels. Then, Melanie, Cole, and Grace had an exciting play date with Cindy Heinn, Heather Perry and her daughters Ella and Ava. Of course, there were also more holidays to celebrate...Aunt Sharon came by to help Grace, Cole, and Melanie have a Happy Valentine's day. While Aunt Mary came on another day bearing gifts of green foods to celebrate St. Patrick's Day, or "Green Day" to Cole. Grace, Melanie, and Cole also had dinner and a movie night with Aunt Sharon and Cousin Serena. The next day, Aunt Sharon came over to watch Grace while Melanie took Cole apple picking with friends Angie and Travis and their girls, Emma and Lily. That same day, Melanie and Grace also came to Regions for a visit, they also brought some dinner for the ladies in the staffing office! Most excitingly, Melanie had to pick up her work schedule, she will gladly be returning to work next week. I think Melanie is looking forward to adult conversation!! And, just this past Wednesday, Paige (from Regions) brought her daughter Juliet over to Mel's for lunch with Cole and Grace.
Thankfully, during much of these last few weeks Grace's health has stabilized. Grace's weight has reached 12 lbs!!! She is eating more consistently. We had noticed, recently, that Grace's seizures seemed to follow administration of the pain medication she was on. Additionally, on Tuesday, Grace has two much larger seizures. While Grace doesn't seem to be too bothered by them, they can be scary to watch. This change in seizing activity was concerning to Mel, so she mentioned it to Matt, Grace's nurse. After a conference with the hospice team, Grace's medication was changed to morphine. This is a very recent development, and to date, this does not seem to offer Grace much comfort. Hopefully, we will figure the best med and the best dose to keep Grace from being unhappy. During this last week, Melanie was also able to break the news to Cole that Grace was going to die. As expected, he was very upset to hear this news, but Cole and Melanie had a long talk and it is Melanie and Jason's hope that this will help prepare Cole for Grace's eventual passing. These last few days have been tough for all of us, but Grace is strong and doing relatively well. Thank you all for keeping her in your thoughts these last 3 months.
Finding time to update the Caring Bridge site has become more and more difficult as these weeks continue.I am sorry I have not been able to be more diligent in journaling about Grace’s adventures.
As you can imagine, during this last week and a half, Grace’s life has been full of fun and family.Some of Grace’s adventures include: going grape-stomping with Grandma Judy (and not particularly enjoying it), having a day full of wonder at the Science Museum of Minnesota, shopping with Melanie and Grandma Judy (mostly for race supplies), a wonderful dinner with Angie, Travis, Emma, and Lilly Rosenwald, winning her first 5K road race (although, I think the race officials might have let her cheat), celebrating Halloween dressed as a bubble bee (Cole was Spiderman of course!), and enjoying a nice Thanksgiving dinner at home.Don’t worry, there were a few quiet days were thrown in the mix too!
The Race for Grace was held last Sunday and was a great success!We raised a lot of money for Grace, and I think, many of us had a great time in the process!!There were over 200 registered racers, with more than 150 actual race participants.And many of those who couldn’t make it to the race donated anyways.In a through upset, Grace finished first with a time of 18:19.44.Big brother Cole, cousin Shelby, and Grandpa Brent also walked away with medals for first place finishes in their age groups.The entire family showed up to help set-up, then those that didn’t race took over running things, while the rest of us set out on the 3.1 mile course.We were also privileged to have many kind volunteers helping us out!Thank you to those of you, who volunteered at the race, helped with setting up and cleaning, participated in the 5K, and donated money.We felt your support the whole way!
Later this week Grandma Judy and Grandpa Bill will be heading back to Colorado, and we are not sure when they will be able to return.Therefore, we are using this week to celebrate the year’s holidays.Tuesday Grace, Melanie, Cole, and Grandma Judy celebrated Halloween, with costumes, decorations, candy, cookies, chili, and a scary movie.Wednesday Grandma Judy and Grandpa Bill collaborated to make a fantastic Thanksgiving dinner for Grace, Cole, Melanie, and Aunt Kristen.For a moment, Grace even sat at the table with a fork and a plate full of food!Yum!On Thursday, some more family will be joining us for a Christmas celebration, followed by New Year’s on Friday.It should be fun!
Again, many many thanks to all of the race participants, volunteers, and donors.
This last week has been very busy! We are all getting ready for The Race for Grace, which will be held in one week (don't worry, there is still time to register...go to the "events" page). Unfortunately, because we have been so busy, I have not had a moment to update the journal. My apologies to all of you who keep up with Grace via these journal entries...
Grace's health has been fairly consistent this last week. She has been eating a respectable amount, not quite as much as we'd like, but more then some days in the past. Grace has been sleeping soundly at night and we have been able to keep her comfortable most of the time. The only problems this week have been with those of us surrounding Grace. The stress of everything is showing on us all and emotions have been running very high lately. However, we are all muddling though as best we can, and Melanie, Jason, and Cole have started to use some of the resources available to them though the hospice program.
Grace had many adventures this week! Her fun started out with a BBQ at Aunt Sharon, Uncle Dan, and Cousin Serena’s house last Saturday. That same day, Grace also got to go golfing for the first time! She was joined by Melanie, Cole, Grandma Judy, Aunt Sharon, and Cousin Serena. Amazingly, Grace got hole-in-ones on every single hole! We were quite impressed!
The next day, Grandma Judy flew back to Colorado
, so Aunt Sharon, Cousin Serena, Aunt Kathy, and Cousin Brad all came over to keep Grace, Cole, and Melanie company. Aunt Mary came over later that night to have her weekly sleepover with Grace. Grace actually slept most of the time, so Mary was only able to gossip a tiny bit with her.
On Monday, Melanie somehow managed to talk me (Kristen) into going to the State Fair with her, Grace, and Cole (yes, Mel wanted to go for the 3rd time). First we had to make a stop at Jason's house to say "Hi" to everyone. Jason, Aunt Jenn, Aunt Heather, and Uncle Jason were all there working the fair. After a bit, we went inside and ate all kinds of fatty food and Cole rode tons of rides. It was lots of fun! Later, Aunt Kathy came over to play with Cole and even brought him to visit Cousin Brad at Subway...terribly exciting for a three year old! Very late that night, Grandma Judy and Grandpa Bill came back from Colorado
(this time they drove). They just can't resist hanging out with us!
Tuesday was very quiet, Grace stayed home most of the day while Melanie ran errand with Grandma Judy. They picked up most of the stuff we'll need for the race!
Wednesday was a little busier. Matt, Grace's hospice nurse came for a visit, this time he also brought Margaret, the Child Life Specialist from Children's hospice program. Margaret specializes in helping children adjust to their own illness, or the illness of a sibling. She had many very helpful suggestions for helping Cole understand what is happening with Grace. The best news of the visit was that Grace was up to 10 lbs. 2 oz. in weight! Yeay! Later that afternoon, Sarah Garvey came over to bring Grace for a walk in the Oakdale
Nature
Center
. Grace, however, wasn’t very interested in being in her seat, so we decided to scrap the walk and all just hung out at home. I don't think Sarah minded too much! Late that night Grace decided to do some promoting for her upcoming race by stopping by Regions. Grace visited the staffing office (Tamie, Karen, and Stacey), then headed up to 7 South, 7 East, and 7 West to say hello. Then Melanie and Grace were tired, and thought it'd be a good time to head home.
While Thursday was fairly uneventful, Friday was very exciting! On Friday, to celebrate Grace's two month birthday, Melanie and Grandma Judy brought Cole and Grace to visit Aunt Sharon at Chisago
Lakes
Elementary School
. There, Grace had her very first day of school! Grace got to sit at a desk, write with a pencil, have the class sing "Happy Birthday" to her, and meet lots of really nice people. Cole also had a great time; he played with some of Aunt Sharon's students then read with them during quiet reading time. Overall, it was an exciting for both Grace AND Cole to visit Aunt Sharon at school!! After a birthday dinner at Fuddruckers, we all went home to go to bed early...
Early Saturday morning, Team Grace got together again for another 5K race. This one might have been the coolest of them all, it was at the Minnesota Zoo! While Grace couldn't come because it was a little chilly, we all had a great time running through the zoo. Aunt Sharon finished in 40:40, Melanie in 45:26, Brent in 45:27, Kristen in 45:28, and Cousin Serena in 50:06. Cole was supposed to run the kid's 1/2 mile race afterwards, but he raced so much of the grownup race, he was too tired to race anymore. So, we all headed home to tell Grace about the race. After a nice morning with Grandma Judy and Grandpa Bill while we all raced, Melanie, Cole, Grace, Grandma Judy, Grandpa Bill, Aunt Sharon, Uncle Dan, and Cousin Serena all went to see the Twins take on the Detroit Tigers. At nine weeks, this was Grace's 2nd Twins game...GO TWINS! The Twins ended up losing the game, but everyone had a great time! The rest of the evening was quiet, we are all resting up after a very busy day.
I hope to see you all next weekend!
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