It has been a long time since we updated, partly because things have been busy... and partly because so many amazing things have happened with our sweet princess.
First, we celebrated her birthday. It was nothing short of amazing. A birthday out of the hospital after a birthday in the hospital... what a contrast. Every little smile she had radiated right into my soul. We took her to the Rainforest Cafe and she loved it. It's so bright and vivid with all the fun animals and plants to look at. Her favorite was definitely the tanks with the bright exotic fish... they have so many tanks! Afterward, we took her for a little birthday shopping and picked up a great outfit from Nana and a Duplo set with a Snow White figure from one of her great-grandpas. She loves that Snow White figure and likes to hold her, play with the fabric skirt, and just study Snow White. The drive home was uneventful, but watching her sleep after such an amazing day was bliss. Once we got home, we enjoyed the amazing cupcakes our friend Rachel made as Lily's birthday cake... orange cupcakes with orange frosting jam-packed full of love. Oh, it does not get better than that!
After celebrating her birthday, we prepared for her last trip to LLUCH for her ventilator tune up. I was surprised how much anxiety I had over admitting Lily when she wasn't in distress... we've never done it before. Every other hospitalization, she's been in respiratory distress beyond what we could manage at home. Easy choice. But with her history, choosing to admit her was rough. She was a champ though... even with a few bumps in the process, she rocked all of her studies and evaluations. Her heart function is great and her VSD patch is holding strong. Physical and occupational therapy say she's making leaps and bounds and are so happy to see so much progress since they've seen her inpatient last. Speech therapy was able to clear her via a barium swallow study to prove that she is not aspirating. Her therapist got a big kick out of the fact that in 35 years of work in the field, Lily is the first child who responded to barbeque sauce. She really likes strong flavors! Her overnight vent study showed that her CO2 levels were in the range of a normal healthy person for the first time in her life and no changes were made to her vent settings. The scope they did of her airway showed that she's in great condition, though a few of the muscles in that area are pretty weak. New information, but not surprising given everything else we know about her history.
Taking her home after just over 24 hours was surreal. We left expecting to move that weekend, but Joey's paperwork didn't arrive in time. As a result, we were able to have one more appointment in Loma Linda, this one with genetics. It was like closing the page on a chapter of our lives. Seeing our geneticist, the same doctor who had followed Lily from birth, was very good closure for me. Very healing. She'd seen Lily through some pretty big miracles and was really able to help celebrate our milestones with us. No matter that they weren't the milestones we expected when we had another little girl... they were our milestones and therefore worth celebrating.
Moving was a whirlwind, and even if I expressed my gratitude every moment of every day, I couldn't express how thankful I am for the tremendous amount of help we received from a lot of really good friends and a lot of brand new friends. Basically, if there was something we needed pre-move, during the move, or after the move (in either state), our friends made it happen. We feel pretty blessed to have made such great friends, even if we miss so many of them terribly.
Once we got to Utah, we started settling in. I say started because in nearly two months, we're not quite done. We did get our various appointments set up pretty quickly, so as a result, Lily has regularly scheduled visits with her pediatrician and almost all of her therapy visits (both rehab clinic and early intervention) set up. We go to her major clinic for her medical care later today. Definitely makes it feel like we're really living in Utah now.
After getting a little settled in, I've been taking the girls all over northern Utah. Just before Lorelei left to visit her grandparents for a few weeks, I had the opportunity to take them to the summer reading program hosted in our area. It was at a park and a lot of fun. Lorelei and Lily each got a free book to take home. Lorelei got to play on the slides while Lily watched Lorelei. They also had balloon animals... turns out Lily LOVES balloon animals. It shouldn't be a surprise since they weigh next to nothing and she can maneuver them so easily, but it was. Watching her was a lot of fun.
That same day, while Lily was watching Lorelei on the slides, I had a chance to talk to another mother briefly about my girls and their miracle journey. She remarked that I am one lucky mama to be enjoying this life that I lead. After pondering on the magnitude of that remark for over a month, applying it to all of the constant service it takes to be the mother of these two girls and all of the battles we have left to fight... I can honestly say that I am a lucky mama indeed.
Thursday, July 12, 2012
Thursday, May 17, 2012
The Miracle of a Smile
Lily is alive because of her smile. Her beautiful, radiant smile, so full of joy and love in spite of the battles she's been through. That pure joy to my heart that she gave to me as I walked out of her PICU room to attend the meeting no parent ever wants to attend. That smile gave me the courage to tell her team, in the face of stark, cold facts, that yes, we would fight for Lily. Because Lily smiled. Lily was happy. She had been through some horrible battles in her (then) thirteen months, but she was still fighting. She was loved and she was happy. And while she fought, we would fight too.
The meeting was efficient, mostly a formality for the team to make sure that mom and dad were facing the reality of the situation. We made plans to try a few more things (while not being fully convinced the outcome would change) and plans to work toward getting Lily home because we wanted what time we had to be meaningful. I walked out of that meeting, kissed my baby girl, and then called the child life specialist to help me learn how to prepare Lorelei for what lay ahead.
17 June 2011 was easily the worst day of my life. But as bad as that day was... 20 June 2011 was one of the best. The infection we'd been fighting for over a month, seeded in blood clots Lily shouldn't have had... it was gone. And it stayed gone. Nothing really happened over the weekend that would have changed it. It was just a miracle and one of the best ones I've been privileged to experience at that.
Lily went home a mere six weeks later and has been home ever since with only one hiccup. She needed a short course of IV antibiotics and then was home again. She has thrived. Lily has met family and friends, made more people than I can count fall in love with her, and has played more with her sister than I could even count. Lily has learned a few signs and was recently caught signing "I love you" to Lorelei with the most adoring look in her eyes. And tomorrow... Lily reaches another milestone. Her second birthday. A day that eleven months ago seemed so impossible and yet, here she is.
A few more moments like this, and maybe, just maybe, I can exhale. In the meantime, Lily smiles at me and each day I'm reminded why this fight is so worth it. And tomorrow... we're going to party like it's her birthday.
The meeting was efficient, mostly a formality for the team to make sure that mom and dad were facing the reality of the situation. We made plans to try a few more things (while not being fully convinced the outcome would change) and plans to work toward getting Lily home because we wanted what time we had to be meaningful. I walked out of that meeting, kissed my baby girl, and then called the child life specialist to help me learn how to prepare Lorelei for what lay ahead.
17 June 2011 was easily the worst day of my life. But as bad as that day was... 20 June 2011 was one of the best. The infection we'd been fighting for over a month, seeded in blood clots Lily shouldn't have had... it was gone. And it stayed gone. Nothing really happened over the weekend that would have changed it. It was just a miracle and one of the best ones I've been privileged to experience at that.
Lily went home a mere six weeks later and has been home ever since with only one hiccup. She needed a short course of IV antibiotics and then was home again. She has thrived. Lily has met family and friends, made more people than I can count fall in love with her, and has played more with her sister than I could even count. Lily has learned a few signs and was recently caught signing "I love you" to Lorelei with the most adoring look in her eyes. And tomorrow... Lily reaches another milestone. Her second birthday. A day that eleven months ago seemed so impossible and yet, here she is.
A few more moments like this, and maybe, just maybe, I can exhale. In the meantime, Lily smiles at me and each day I'm reminded why this fight is so worth it. And tomorrow... we're going to party like it's her birthday.
Wednesday, May 9, 2012
Lily's Birthday - Wish List
Lily also has a wish list of custom gifts. While she would love to have each item on this list, she realizes she shouldn't expect gifts and this list is just for ideas for those who might have wanted to get her something but didn't know what... especially since several of you have asked! We'll try to get pictures to go with every entry, but there are quite a few to start.
1. Video stories in ASL (if you do this, please tell Mommy which book it is so we can make sure we have it or get it for Lily!)
2. Custom trach ties
These can be ordered from http://trendytrachs.com in a size small, or they can be made. Please contact her mommy for details if interested.
3. Custom g-tube dressings
These can be ordered from http://patchworkpeddler.com or made. These are 2"-3" in diameter and the hole in the middle is minimal. Snaps are optional but very useful.
4. Large, long, and possibly frilly bibs
Lily wear bibs often to protect her skin from her drooling, but still loves to be fashionable and loves playing with textures. Her neck is 13" in circumference, which is larger than will fit most bibs that can be bought easily at the store so once again, the princess requires custom style. The following are some examples:
5. Wheelchair seat strap covers
Same as car seat strap covers, but for the wheelchair. The straps sometimes dig into Lily's skin. Should be pretty thin but are really easy to make in really fun prints. Like these, from Twigs and Tweets on Etsy.
6. Texture necklaces like this one.
Or like this one from Baby Birdie Boutique on Etsy. Lily loves to play with textures and colors and bigger, chunkier necklaces are great because she can pick them up again if she drops them.
7. Boppy pillow covers.
Lily still uses her Boppy pillow almost daily for positioning. She loves it! The one pictured is from Amazon.com, but these can be bought almost anywhere that sells baby things and can be made pretty easily by the sewing-inclined.
1. Video stories in ASL (if you do this, please tell Mommy which book it is so we can make sure we have it or get it for Lily!)
2. Custom trach ties
These can be ordered from http://trendytrachs.com in a size small, or they can be made. Please contact her mommy for details if interested.
3. Custom g-tube dressings
These can be ordered from http://patchworkpeddler.com or made. These are 2"-3" in diameter and the hole in the middle is minimal. Snaps are optional but very useful.
4. Large, long, and possibly frilly bibs
Lily wear bibs often to protect her skin from her drooling, but still loves to be fashionable and loves playing with textures. Her neck is 13" in circumference, which is larger than will fit most bibs that can be bought easily at the store so once again, the princess requires custom style. The following are some examples:
5. Wheelchair seat strap covers
Same as car seat strap covers, but for the wheelchair. The straps sometimes dig into Lily's skin. Should be pretty thin but are really easy to make in really fun prints. Like these, from Twigs and Tweets on Etsy.
6. Texture necklaces like this one.
7. Boppy pillow covers.
Lily still uses her Boppy pillow almost daily for positioning. She loves it! The one pictured is from Amazon.com, but these can be bought almost anywhere that sells baby things and can be made pretty easily by the sewing-inclined.
Thursday, May 3, 2012
Lily's Birthday - Inviting Avery
Some of you may have already heard about little miss Avery, of Avery's Bucket List. She is an amazing little girl with amazing parents who, about a month ago, were handed a major diagnosis of Spinal Muscular Atrophy, type 1. Instead of staying with the initial shock of something so major, they decided to aim high and really celebrate the rest of Avery's life by making her Bucket List and trying to cross off as many things as possible, including never letting SMA take Avery's smile away.
Sadly, Avery had the chance to cross that off on April 30th when she returned to heaven as a 5 month old little girl. One of her bucket list items was to go to a birthday party. Since Lily's virtual party is being celebrated everywhere, I'd like to specifically invite one Avery Lynn Canahuati to Lily's party on May 18th. She is invited celebrate with us with our many other angel friends in heaven. Lily says she doesn't even care if they wear orange.
With all that we've battled with Lily, fighters like little Avery and her parents inspire us. Our hearts go out to them at this time and we thank them most sincerely for sharing Avery with the world.
The Facebook link to Lily's virtual party is http://www.facebook.com/events/304850569590582/. Everyone who is interested is invited to attend.
Lily's Birthday - Awareness List
Because we expect that the list of things Lily would like to help raise awareness for will be quite long, I've created a blog post just for that.
Avery, of Avery's Bucket List - averycan.blogspot.com
Avery's favorite charities - sophiascure.org and fightsma.org
Avery, of Avery's Bucket List - averycan.blogspot.com
Avery's favorite charities - sophiascure.org and fightsma.org
Lily's Birthday - Good Karma List
One of Lily's wishes is to add good karma to the world in her name. Here's her list of ideas for how to do that. Some of them involve money, others just time.
1. Donate blood. Lily has received blood something like eight times. That means at least eight people who have saved her life without even knowing it. Infant open heart surgery requires two or three transfused units of blood even if the operation goes smoothly. Lily had hers at seven weeks. (And we would especially love to thank everyone who has donated to Lily, even though they'll never know she got it.)
P.S. For the friends in Lily's home town, the blood bank bus will be out at Toyota this week between 9:00 a.m. and 2:30 p.m. and at Kerr McGee on Wednesday, May 16th from 12:00 p.m. to 6:30 p.m.
2. Make an informed decision regarding organ donation... and act on it. Lily has many friends who are alive simply because of selfless acts by many grieving families. While we realize and respect that not everyone wishes to be an organ donor, we ask that everyone makes an informed decision. And if you chose to be a donor, sign up on an organ donation registry. For more information on organ donation, visit donatelife.net.
And thank you to everyone in Lily's life who has already made and acted on their decision.
3. Support awareness of any medical condition affecting children. Lily remains, for the most part, undiagnosed. But she has many friends who are diagnosed who want to get their stories out there. Help the world change for good, help keep the public aware of these conditions, and help create a world that welcomes children of all abilities and with any condition.
Miracle friends, if you have a link you'd like added to this, please let us know. It can be a site for awareness run by an organization or a family's blog detailing their journey with a medical miracle (and angels are welcome too). For personal blogs, we do ask that you have permission to share if the blog isn't yours.
4. Do a kind deed for another person. Whether it's helping someone out to their car at the store, making your husband's favorite dinner even though you don't like it, or letting your kids get away with something they would normally be in trouble for doing, just do something nice. Doing multiple nice things is a major plus.
5. Donate to something. Anything will work, whether it is a cause for Lily and her friends, the Ronald McDonald House coin collecting at McDonald's, the teenager trying to make it on a mission trip, or the person asking for change who can't afford to do something they need. Donate free of judgment to something and give a huge karma boost to the world by choosing humanity over money. It doesn't matter if it is a single penny or $500,000. Just consider it.
And, since time is money.... donating time as a volunteer would count for this too. Taking the time to deliver Meals on Wheels, clean up your community, fill a volunteer role at your local hospital, or even just taking a meal to a friend having a hard day shows so much compassion. Lily likes compassion.
6. Cherish your family and friends. Hold your children close. Call long distance family. Let the people you love know that you love them. Because tomorrow isn't a promise and today is a gift. Live in the moment and cherish it all.
1. Donate blood. Lily has received blood something like eight times. That means at least eight people who have saved her life without even knowing it. Infant open heart surgery requires two or three transfused units of blood even if the operation goes smoothly. Lily had hers at seven weeks. (And we would especially love to thank everyone who has donated to Lily, even though they'll never know she got it.)
P.S. For the friends in Lily's home town, the blood bank bus will be out at Toyota this week between 9:00 a.m. and 2:30 p.m. and at Kerr McGee on Wednesday, May 16th from 12:00 p.m. to 6:30 p.m.
2. Make an informed decision regarding organ donation... and act on it. Lily has many friends who are alive simply because of selfless acts by many grieving families. While we realize and respect that not everyone wishes to be an organ donor, we ask that everyone makes an informed decision. And if you chose to be a donor, sign up on an organ donation registry. For more information on organ donation, visit donatelife.net.
And thank you to everyone in Lily's life who has already made and acted on their decision.
3. Support awareness of any medical condition affecting children. Lily remains, for the most part, undiagnosed. But she has many friends who are diagnosed who want to get their stories out there. Help the world change for good, help keep the public aware of these conditions, and help create a world that welcomes children of all abilities and with any condition.
Miracle friends, if you have a link you'd like added to this, please let us know. It can be a site for awareness run by an organization or a family's blog detailing their journey with a medical miracle (and angels are welcome too). For personal blogs, we do ask that you have permission to share if the blog isn't yours.
4. Do a kind deed for another person. Whether it's helping someone out to their car at the store, making your husband's favorite dinner even though you don't like it, or letting your kids get away with something they would normally be in trouble for doing, just do something nice. Doing multiple nice things is a major plus.
5. Donate to something. Anything will work, whether it is a cause for Lily and her friends, the Ronald McDonald House coin collecting at McDonald's, the teenager trying to make it on a mission trip, or the person asking for change who can't afford to do something they need. Donate free of judgment to something and give a huge karma boost to the world by choosing humanity over money. It doesn't matter if it is a single penny or $500,000. Just consider it.
And, since time is money.... donating time as a volunteer would count for this too. Taking the time to deliver Meals on Wheels, clean up your community, fill a volunteer role at your local hospital, or even just taking a meal to a friend having a hard day shows so much compassion. Lily likes compassion.
6. Cherish your family and friends. Hold your children close. Call long distance family. Let the people you love know that you love them. Because tomorrow isn't a promise and today is a gift. Live in the moment and cherish it all.
Tuesday, May 1, 2012
Lily's Birthday - Party
Presents Lily would like you to please, please, please get her for her birthday:
1. A big virtual birthday party, full of people from all over the world celebrating Lily and all of her miracles over the past two years. Lily specifically requests that guests wear orange and encourages them to have mini-parties wherever they are. She also thinks that her birthday is a great reason to have cupcakes as a midnight snack (she was born just after midnight) or for breakfast and then go do something fun all day.
2. Pictures of her friends and loved ones in their orange, including any new friends. Group pictures are lovely, but Lily would specifically like shots of each person individually, submitted with their names as they'd like Lily to know them. Getting both is like getting a well decorated present and playing with the wrapping paper and ribbon... and still having a gift for later. These can be submitted to princesslilysmiracle via her gmail.com email account. (Please, no robots unless they are also wearing orange.)
3. Pictures of anything else. Really, anything. Everyday object and famous locations. Raspberries, couches, books, toys, toothbrushes, footballs... you name it. Lily loves to use her eyes to learn about the world and these pictures are incredibly helpful to her. If you really want to get creative, take pictures of the item in use, in context, out of context, up close, far away, etc. For example, a football could be photographed on a field, with a helmet and uniform jersey, with a baseball and a soccer ball, with a football player, as a closeup of the laces or skin, as a traditional football or a foam football, or with Aunt Dallas at Mommy's wedding. (Okay, we already have a picture of that last one.) You can send one picture or a hundred or none. Lily's only request is that your picture violates no copyrights.
4. The gift of sharing her language. Whether you learn to sign fluently or just learn how to sign "Happy Birthday!" or "I love you!", Lily asks that all of her guests who are able to do so learn to share her language. http://aslpro.com is a good resource for a quick sign, and Signing Time (signingtime.com) has a great series of videos for teaching sign to small children.
5. Prayers and good karma. Lily feels she can never have enough of either and loves both prayers and good acts done in her name. Below is a link to a list of ideas she encourages everyone to try.
The Good Karma List
1. A big virtual birthday party, full of people from all over the world celebrating Lily and all of her miracles over the past two years. Lily specifically requests that guests wear orange and encourages them to have mini-parties wherever they are. She also thinks that her birthday is a great reason to have cupcakes as a midnight snack (she was born just after midnight) or for breakfast and then go do something fun all day.
2. Pictures of her friends and loved ones in their orange, including any new friends. Group pictures are lovely, but Lily would specifically like shots of each person individually, submitted with their names as they'd like Lily to know them. Getting both is like getting a well decorated present and playing with the wrapping paper and ribbon... and still having a gift for later. These can be submitted to princesslilysmiracle via her gmail.com email account. (Please, no robots unless they are also wearing orange.)
3. Pictures of anything else. Really, anything. Everyday object and famous locations. Raspberries, couches, books, toys, toothbrushes, footballs... you name it. Lily loves to use her eyes to learn about the world and these pictures are incredibly helpful to her. If you really want to get creative, take pictures of the item in use, in context, out of context, up close, far away, etc. For example, a football could be photographed on a field, with a helmet and uniform jersey, with a baseball and a soccer ball, with a football player, as a closeup of the laces or skin, as a traditional football or a foam football, or with Aunt Dallas at Mommy's wedding. (Okay, we already have a picture of that last one.) You can send one picture or a hundred or none. Lily's only request is that your picture violates no copyrights.
4. The gift of sharing her language. Whether you learn to sign fluently or just learn how to sign "Happy Birthday!" or "I love you!", Lily asks that all of her guests who are able to do so learn to share her language. http://aslpro.com is a good resource for a quick sign, and Signing Time (signingtime.com) has a great series of videos for teaching sign to small children.
5. Prayers and good karma. Lily feels she can never have enough of either and loves both prayers and good acts done in her name. Below is a link to a list of ideas she encourages everyone to try.
The Good Karma List
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