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
Lily's Story - The First Two Years
After an easy pregnancy and a long but routine delivery, Lillian Isabella Marie was born on 18 May 2010 at 0047. Her body failed to take over after her umbilical cord was clamped and my body could no longer provide for her. It took her five minutes to take her first spontaneous breath, in the doorway of our delivery room as the nurse was running her to the nursery, no less. These were the some of the longest five minutes of my life. The sheer joy of that little "eh" Lily cried, the most magical sound I have EVER heard, is not surpassed by much. This was our first clue that something might be wrong with our precious daughter... and that she was a fighter.
Most of the next several days of Lily's life are a complete blur to me. She was transferred to the NICU of a hospital two hours from our home where she spent the next 97 days. During her stay, we found a hole in her heart (very large VSD), central sleep apnea (her brain forgetting to breathe, treated in infants with caffeine), the infant version of chronic lung disease (BPD, the cause of her oxygen dependency), and the beginning steps to her eventual cerebral palsy diagnosis (serious muscle tone difficulties including problems with eating)... and a unique genetic anomaly she inherited from her mother that we otherwise no nothing about. While Lily was in the NICU, she fought hard with Mommy by her side and visits from Daddy as often as possible. She got to see big sister Lorelei three times with scheduled Child Life visits. Lily had her heart repaired at seven weeks old and her G-tube placed at twelve weeks old. After correcting an issue with her caffeine for the CSA and failing the newborn hearing screen, Lily was able to go home for the first time on 23 August 2010 at just over three months old.
During the next several months, Lily was readmitted to the hospital four times and had CPR performed at home six times (in six weeks). We also found out that the reason she failed her hearing screen is that our little girl, born hearing, had over the course of her treatment become completely deaf. The hearing loss was probably caused by medications she had to receive; the CPR was due to outgrowing her caffeine dose; the hospitalizations for catching colds including RSV in December 2010. Lily was admitted to PICU and spent eight weeks battling RSV followed by placement of a VP shunt to correct for the severe cause of hydrocephalus (excess brain fluid) they caught on a hunch as Lily masked all of the standard symptoms. During this admission, Lily was switched from caffeine to manage the sleep apnea to BiPAP, a specific form of ventilation causing her to need a face mask and a vent for sleeping. She was discharged 4 February 2011 and spent two months living in the Steven's Hope for Children apartments with our family. Those two months were some of the greatest times we've had as a family. We moved back to our home... and then brought Lily back two days later.
Lily had a cold that morphed into much more. She caught an incredibly rare yeast infection in her blood and seeded blood clots she'd managed to acquire in the hospital. This left her a very sick little girl for her first birthday. Nearly a month after her birthday, on 17 June 2011, our team sat me down to inform me that there was nothing more they could do for Lily. The medications they were using for the infection weren't getting through and she was rapidly deteriorating. It was obvious, and I already knew it... but on my way to that very same meeting, Lily was awake and smiling at me! We decided to fight for as long as she was still fighting and that if medicine was out of options, we were taking her home to enjoy her there. Plans were made to get Lily a trach so she could return home, which discussion of a more permanent line to give her the meds she needed.
That was Friday. Monday, after over six solid weeks of fighting... the infection was gone. Just gone. We figured it had been a miracle and ran with it. Six weeks from that date and we were home. We did our training, prepared our home, and gave Lily six weeks of the medication cocktail she'd been on at the time her infection cleared. 2 August 2011, Lily came home to be with her family.
Lily has been home ever since, even battling intense infections, with a single exception of a ten day stay for antibiotics last February. She's now celebrated the birthdays of her parents and big sister twice each, including a trip to Disneyland. She has been able to travel to see family and can even occasionally take a trip to somewhere fun in town. She's progressed enough to get some really neat equipment to help her, including a device that helps her stand and a pediatric wheelchair that supports her body while out and about. She still battles all of her medical battles with the same graceful joy for life. She makes progress and has setbacks and reminds Mommy that she'll do things in her own time and according to her own interests. And most importantly... she's still in the fight, my brave little girl who teaches me what life and love are all about.
Most of the next several days of Lily's life are a complete blur to me. She was transferred to the NICU of a hospital two hours from our home where she spent the next 97 days. During her stay, we found a hole in her heart (very large VSD), central sleep apnea (her brain forgetting to breathe, treated in infants with caffeine), the infant version of chronic lung disease (BPD, the cause of her oxygen dependency), and the beginning steps to her eventual cerebral palsy diagnosis (serious muscle tone difficulties including problems with eating)... and a unique genetic anomaly she inherited from her mother that we otherwise no nothing about. While Lily was in the NICU, she fought hard with Mommy by her side and visits from Daddy as often as possible. She got to see big sister Lorelei three times with scheduled Child Life visits. Lily had her heart repaired at seven weeks old and her G-tube placed at twelve weeks old. After correcting an issue with her caffeine for the CSA and failing the newborn hearing screen, Lily was able to go home for the first time on 23 August 2010 at just over three months old.
During the next several months, Lily was readmitted to the hospital four times and had CPR performed at home six times (in six weeks). We also found out that the reason she failed her hearing screen is that our little girl, born hearing, had over the course of her treatment become completely deaf. The hearing loss was probably caused by medications she had to receive; the CPR was due to outgrowing her caffeine dose; the hospitalizations for catching colds including RSV in December 2010. Lily was admitted to PICU and spent eight weeks battling RSV followed by placement of a VP shunt to correct for the severe cause of hydrocephalus (excess brain fluid) they caught on a hunch as Lily masked all of the standard symptoms. During this admission, Lily was switched from caffeine to manage the sleep apnea to BiPAP, a specific form of ventilation causing her to need a face mask and a vent for sleeping. She was discharged 4 February 2011 and spent two months living in the Steven's Hope for Children apartments with our family. Those two months were some of the greatest times we've had as a family. We moved back to our home... and then brought Lily back two days later.
Lily had a cold that morphed into much more. She caught an incredibly rare yeast infection in her blood and seeded blood clots she'd managed to acquire in the hospital. This left her a very sick little girl for her first birthday. Nearly a month after her birthday, on 17 June 2011, our team sat me down to inform me that there was nothing more they could do for Lily. The medications they were using for the infection weren't getting through and she was rapidly deteriorating. It was obvious, and I already knew it... but on my way to that very same meeting, Lily was awake and smiling at me! We decided to fight for as long as she was still fighting and that if medicine was out of options, we were taking her home to enjoy her there. Plans were made to get Lily a trach so she could return home, which discussion of a more permanent line to give her the meds she needed.
That was Friday. Monday, after over six solid weeks of fighting... the infection was gone. Just gone. We figured it had been a miracle and ran with it. Six weeks from that date and we were home. We did our training, prepared our home, and gave Lily six weeks of the medication cocktail she'd been on at the time her infection cleared. 2 August 2011, Lily came home to be with her family.
Lily has been home ever since, even battling intense infections, with a single exception of a ten day stay for antibiotics last February. She's now celebrated the birthdays of her parents and big sister twice each, including a trip to Disneyland. She has been able to travel to see family and can even occasionally take a trip to somewhere fun in town. She's progressed enough to get some really neat equipment to help her, including a device that helps her stand and a pediatric wheelchair that supports her body while out and about. She still battles all of her medical battles with the same graceful joy for life. She makes progress and has setbacks and reminds Mommy that she'll do things in her own time and according to her own interests. And most importantly... she's still in the fight, my brave little girl who teaches me what life and love are all about.
Friday, April 27, 2012
The Sweetest Moment
I really wish I knew how to make a picture post on this site, because tonight, I got to witness one of the sweetest moments a mother could hope to see. And I caught it on camera, catching a moment that is worth far more than a thousand words to be remembered forever.
I caught Lily telling her big sister "I love you" in sign. While Lorelei signed it back. That moment, one that will remain imprinted in my heart through the eternities, captured to be shared by all who love them. The raw emotion of such a moment even being possible catches up to me every time I think of it. What sweeter moment could a mother hope to experience but to see her children expressing love for each other?
For a long time, we didn't know if Lily would be able to express anything. We hoped and prayed and stayed positive, but we did wonder if Lily would ever be able to sign. If she'd understand. If she'd physically be able to open her hands to sign. If she'd survive the incredible battles she's fought to get to her second birthday. Then at nine months old, Lily started signing "Mommy" after Lorelei took her hand and taught her how (that was another really cool moment). And then, just before her second Christmas, Lily's first at home, she picked up a second sign. And then, right after my father passed away, having never met Lily... Lily started signing family. (She signs half of the sign while one of us signs the other half. It seems to add something extra magical that way.) So Lily can, and chooses to, sign three magic signs.
And Mommy's heart says that if all Lily ever knows of life is love and family... what a joyous life she will have. And if she learns more, experiences more, and shares more... how great will that be for the world.
I caught Lily telling her big sister "I love you" in sign. While Lorelei signed it back. That moment, one that will remain imprinted in my heart through the eternities, captured to be shared by all who love them. The raw emotion of such a moment even being possible catches up to me every time I think of it. What sweeter moment could a mother hope to experience but to see her children expressing love for each other?
For a long time, we didn't know if Lily would be able to express anything. We hoped and prayed and stayed positive, but we did wonder if Lily would ever be able to sign. If she'd understand. If she'd physically be able to open her hands to sign. If she'd survive the incredible battles she's fought to get to her second birthday. Then at nine months old, Lily started signing "Mommy" after Lorelei took her hand and taught her how (that was another really cool moment). And then, just before her second Christmas, Lily's first at home, she picked up a second sign. And then, right after my father passed away, having never met Lily... Lily started signing family. (She signs half of the sign while one of us signs the other half. It seems to add something extra magical that way.) So Lily can, and chooses to, sign three magic signs.
And Mommy's heart says that if all Lily ever knows of life is love and family... what a joyous life she will have. And if she learns more, experiences more, and shares more... how great will that be for the world.
Thursday, April 26, 2012
"Thank You"
I had a most amazing experience yesterday at the gym. I had the opportunity to use my signing skills to communicate with someone who is deaf. He had been trying to communicate that a certain machine wasn't working well and then another gym member used the machine next to it with the same luck. When I signed "Same?", he was rather pleasantly surprised to see that I was a fellow signer. Below is the start of our conversation, as it was actually signed. (ASL syntax is not the same as English, so it may seem awkward to read, but actually makes good sense signed.)
Me: "Same?"
Him: "Same. Sign little?"
Me: "Little. My daughter deaf."
Him: "How old?"
Me: "Two." reaching for my phone, which has a picture of both Lily and Lorelei
Me again: "My daughters."
Him: "Which one?"
Me: "Little. Hearing, medication, no hearing. Deaf. Oh well. Mommy learn sign."
Him: "Thank you."
I never imagined being thanked so earnestly for learning to sign for Lily. It really meant a lot to me, especially coming from someone who is deaf and uses ASL to communicate. I'm not yet to the point where I can think that deafness is not a disability (which is a common viewpoint for the Deaf community), but I am at a point where I think disabilities are only as limiting as we let them be. Using sign language to communicate with my deaf daughter makes just as much sense to me as using a wheelchair for my daughter who is unable to walk. Yes, it takes a lot more effort to learn, but it has so many benefits that learning is beyond worth it. And, once more, it's what Lily needs. Isn't it my job as her mother to give her what she'll need in life?
The fact is Lily IS disabled. Even beyond her complete hearing loss. She also has cerebral palsy and enough difficulty breathing to require ventilation via a tracheostomy and she's oxygen dependent and severe developmental delays across the board. That is a disability. It's certainly enough to qualify her for a disabled parking hang tag. However, NONE of that makes her UNable. And there is nothing wrong with being disabled. It's just a word, a word that describes the fact that Lily isn't like the rest of us. Lily is amazing. Lily can still do just about anything between adaptive equipment, adapting circumstances to meet her needs including taking extra time when needed, having people around her who support her, and the sheer will power to want to do it.
Yes, Lily will have to work for everything she needs, but she doesn't know anything different. And I refuse to raise her to see her disabilities as limiting. Because that's another part of my job as her mother. To show her that she is able and should dream, and work toward the dream, of whatever her heart desires. To hold her hand on the journey and cheer her on. To be there when it gets hard and remind her that better days will come. It doesn't matter if she wants to be a mother, a doctor, or a janitor... if her heart desires it, she'll find that path.
About my exchange with my gym friend... I also had my first opportunity to tell someone my name via ASL fingerspelling. It was fun and memorable. The whole exchange took less than fifteen minutes, but I'll remember it for the rest of my life. I used a skill that I've been developing for Lily to have a meaningful exchange with another person. It's really opened my eyes to what signing with my daughter will be like eventually, as she learns more signs, and it definitely made me hungry to learn so much more. And being thanked was really just the icing on the cake, because my heart is so full of joy for what Lily DOES have... a family who loves her dearly.
Me: "Same?"
Him: "Same. Sign little?"
Me: "Little. My daughter deaf."
Him: "How old?"
Me: "Two." reaching for my phone, which has a picture of both Lily and Lorelei
Me again: "My daughters."
Him: "Which one?"
Me: "Little. Hearing, medication, no hearing. Deaf. Oh well. Mommy learn sign."
Him: "Thank you."
I never imagined being thanked so earnestly for learning to sign for Lily. It really meant a lot to me, especially coming from someone who is deaf and uses ASL to communicate. I'm not yet to the point where I can think that deafness is not a disability (which is a common viewpoint for the Deaf community), but I am at a point where I think disabilities are only as limiting as we let them be. Using sign language to communicate with my deaf daughter makes just as much sense to me as using a wheelchair for my daughter who is unable to walk. Yes, it takes a lot more effort to learn, but it has so many benefits that learning is beyond worth it. And, once more, it's what Lily needs. Isn't it my job as her mother to give her what she'll need in life?
The fact is Lily IS disabled. Even beyond her complete hearing loss. She also has cerebral palsy and enough difficulty breathing to require ventilation via a tracheostomy and she's oxygen dependent and severe developmental delays across the board. That is a disability. It's certainly enough to qualify her for a disabled parking hang tag. However, NONE of that makes her UNable. And there is nothing wrong with being disabled. It's just a word, a word that describes the fact that Lily isn't like the rest of us. Lily is amazing. Lily can still do just about anything between adaptive equipment, adapting circumstances to meet her needs including taking extra time when needed, having people around her who support her, and the sheer will power to want to do it.
Yes, Lily will have to work for everything she needs, but she doesn't know anything different. And I refuse to raise her to see her disabilities as limiting. Because that's another part of my job as her mother. To show her that she is able and should dream, and work toward the dream, of whatever her heart desires. To hold her hand on the journey and cheer her on. To be there when it gets hard and remind her that better days will come. It doesn't matter if she wants to be a mother, a doctor, or a janitor... if her heart desires it, she'll find that path.
About my exchange with my gym friend... I also had my first opportunity to tell someone my name via ASL fingerspelling. It was fun and memorable. The whole exchange took less than fifteen minutes, but I'll remember it for the rest of my life. I used a skill that I've been developing for Lily to have a meaningful exchange with another person. It's really opened my eyes to what signing with my daughter will be like eventually, as she learns more signs, and it definitely made me hungry to learn so much more. And being thanked was really just the icing on the cake, because my heart is so full of joy for what Lily DOES have... a family who loves her dearly.
Wednesday, April 11, 2012
Courage
Beads of Courage (beadsofcourage.org) is a program that helps give children ownership of their medical battles. Basically, through the program, a child gets beads for each of the procedures and medical support they endure in their fight for healing. They recently added a chronic illness program to their list, so I've looked into it again for Lily. That, and I think she'd enjoy playing with her beads with her hands, so they'd have some meaning for her.
Beads of Courage sent me a list of what colors for what events so I could send in a request for Lily. It's a rather extensive and somewhat overwhelming list (they allow estimates to keep it simple for families)... and Lily qualifies for every single category on the standard list. Every single one. In her first year alone.
I'm floored. Maybe not all of her supporters are as astounded by this as I am, but I don't see all of that when I look at my daughter. I know she's alive because of a miracle. A big miracle. And I know how hard we fought to get that miracle because I was right there with her, holding her hand the whole way. But when I look at Lily, all I see is a little girl who loves life, loves her family, and just simply loves.
I think that's what real courage is. Loving life in spite of everything trying to stop you. So I'll submit her history via her own bead journal, because Lily has amazing courage. And I really do think she'll love her beads.
Beads of Courage sent me a list of what colors for what events so I could send in a request for Lily. It's a rather extensive and somewhat overwhelming list (they allow estimates to keep it simple for families)... and Lily qualifies for every single category on the standard list. Every single one. In her first year alone.
I'm floored. Maybe not all of her supporters are as astounded by this as I am, but I don't see all of that when I look at my daughter. I know she's alive because of a miracle. A big miracle. And I know how hard we fought to get that miracle because I was right there with her, holding her hand the whole way. But when I look at Lily, all I see is a little girl who loves life, loves her family, and just simply loves.
I think that's what real courage is. Loving life in spite of everything trying to stop you. So I'll submit her history via her own bead journal, because Lily has amazing courage. And I really do think she'll love her beads.
Tuesday, April 10, 2012
Happy birthday, Mommy!
It's been a great birthday. A dream compared to last year when Lily was sick. My birthday was right before we took her to the hospital with a cold and she stayed for three months. This year... the contrast is amazing. Lily smiled at me. She held my hand. She let me feed her ice cream from Baskin Robbins when we went to use my birthday coupon.
I can now proudly say that I am twenty-seven years old. I'll own it, all twenty-seven years, because they carry my battle scars. Lily gave me that. For such a little girl, she's given me a lot. And her sister too, because watching Lorelei love Lily is one of the greatest joys life can bring me. And she's so good at it.
Today really was a magically simple and wonderful day.
I can now proudly say that I am twenty-seven years old. I'll own it, all twenty-seven years, because they carry my battle scars. Lily gave me that. For such a little girl, she's given me a lot. And her sister too, because watching Lorelei love Lily is one of the greatest joys life can bring me. And she's so good at it.
Today really was a magically simple and wonderful day.
Sunday, March 18, 2012
At the End of the Rainbow
All of the festivities from St. Patrick's Day are calming down, but talk of the feisty leprechauns and their gold has left me a little pensive lately. Because of the gift our leprechauns gave us, rain, we had rainbows in Ridgecrest yesterday. They are a very rare treat because it only rains here a few times a year. Lore would say that at the end of a rainbow is where you'll find a leprechaun's gold.
I wonder sometimes, just what IS at the end of our rainbow with Lily. We wonder what her future will hold, wonder what amazing things she'll show us. We wonder what Lorelei will become, if they'll stay close... so many things. What I do know is this. We are living in the rainbow, and if that isn't heaven, I don't know what is.
I wonder sometimes, just what IS at the end of our rainbow with Lily. We wonder what her future will hold, wonder what amazing things she'll show us. We wonder what Lorelei will become, if they'll stay close... so many things. What I do know is this. We are living in the rainbow, and if that isn't heaven, I don't know what is.
Saturday, March 17, 2012
A Day Of Green
St. Partick's Day has always been fun for our family. Every year since we were married, Joey and I "enjoy" some traditionally Irish food. I say "enjoy" because while it's fun, I actually hate the traditional corned beef and the traditional cabbage. Joey isn't too keen on the cabbage either. We also have red potatoes and this year, after the kind young lady at Costco told us it was originated in Ireland, a very nice Red Velvet Cake. Please don't tell me if you know that isn't Irish because it was really good and we'll be calling it Irish next year. And some Irish cheese, which was especially delicious with the potatoes. Lorelei enjoyed all of it with some careful advertising.
We also had a visit from the leprechauns this morning. They turned our milk green and somehow got into Lily's formula cans and made that green too. They then played a really mean trick. We looked outside as we were about to get into the car for Lorelei's birthday play date....and it was sunny. Gorgeous. And raining. In Ridgecrest where it never rains.
I'm sure those leprechauns got quite the kick out of our scrambling around to decide if we could still have a park play date, or should we move it and where. We decided to start with the park since we didn't have everyone's phone number, and moved to McDonald's when the weather was colder than Lorelei could bear. Our many thanks to all our friends crazy enough to come enjoy a rare Ridgecrest treat and to the friends who joined the party after moving indoors.
We also had a visit from the leprechauns this morning. They turned our milk green and somehow got into Lily's formula cans and made that green too. They then played a really mean trick. We looked outside as we were about to get into the car for Lorelei's birthday play date....and it was sunny. Gorgeous. And raining. In Ridgecrest where it never rains.
I'm sure those leprechauns got quite the kick out of our scrambling around to decide if we could still have a park play date, or should we move it and where. We decided to start with the park since we didn't have everyone's phone number, and moved to McDonald's when the weather was colder than Lorelei could bear. Our many thanks to all our friends crazy enough to come enjoy a rare Ridgecrest treat and to the friends who joined the party after moving indoors.
Friday, March 16, 2012
Sparkle and Smiles
Lily had physical and occupational therapy in Loma Linda today, after which we went to Costco to pick up a few things. She wore her Disneyland sunglasses, with all their beautiful orange sparkles, and got a million smiles. Everyone who sees her tells us how cute she is. People can't help but to smile.
This reaction, these smiles... are the reason why we keep Lily surrounded by the cute things of a little girl's childhood. Because we love the smiles, the love for Lily... and the sparkle that keeps that little joy in her life.
This reaction, these smiles... are the reason why we keep Lily surrounded by the cute things of a little girl's childhood. Because we love the smiles, the love for Lily... and the sparkle that keeps that little joy in her life.
Thursday, March 15, 2012
Surprises
Lily has been having a reaction to her Synagis vaccine. In my mind, it's still worth giving it, but we've definitely been letting her have an easy day since she hit 102.7 last night. The good news is that the fever didn't last through the first dose of Motrin and she's been stable all day. That... and Mommy got to spend a lot more time with Lorelei today. A very pleasant surprise indeed.
Around 10:30 this morning, our M tank, a very large oxygen container, starts suddenly spewing oxygen out like there is no tomorrow. We tightened the tank closed and ordered a refill. A very interesting surprise.
Lorelei has so much personality. Lately, she really enjoys the way I pick her up and set her on my shoulders before flipping her off for a (very controlled) "dis-a-mount". It's the moments like that that have life worth living. Each of them is its own surprise, it's own joy... and I am so glad to have them.
I also just joined the local gym... so here's hoping that we have some surprises in that arena too.
Around 10:30 this morning, our M tank, a very large oxygen container, starts suddenly spewing oxygen out like there is no tomorrow. We tightened the tank closed and ordered a refill. A very interesting surprise.
Lorelei has so much personality. Lately, she really enjoys the way I pick her up and set her on my shoulders before flipping her off for a (very controlled) "dis-a-mount". It's the moments like that that have life worth living. Each of them is its own surprise, it's own joy... and I am so glad to have them.
I also just joined the local gym... so here's hoping that we have some surprises in that arena too.
Wednesday, March 14, 2012
With Friends Like These...
When I arrived at my favorite restaurant, a nice little family owned Vietnamese place where I haven't been in at least three months, the hostess Amy recognized me on sight. Before she could even tell me that they were out of my favorite order, she was asking about Lily and Lorelei. Amy is one of many people in my life who has fallen hopelessly in love with my daughters on our journey. She's never met Lily and I really hope that one day, she will have that opportunity.
We have many people in our lives who feel this way about our girls. It makes so much difference to our situation, coping with something so much bigger than ourselves. Our successes are shared among hundreds, and the sorrows we shared are felt in many hearts. While we may feel alone in the sense that Lily is unique, there are more people than I can keep track of who love Lily, pray for her, do good in her name... They follow her story. They learn new things, see life in a different way. Take the joy from each miracle and let it multiply. We might feel alone, but we aren't.
With friends like these, we never will be.
We have many people in our lives who feel this way about our girls. It makes so much difference to our situation, coping with something so much bigger than ourselves. Our successes are shared among hundreds, and the sorrows we shared are felt in many hearts. While we may feel alone in the sense that Lily is unique, there are more people than I can keep track of who love Lily, pray for her, do good in her name... They follow her story. They learn new things, see life in a different way. Take the joy from each miracle and let it multiply. We might feel alone, but we aren't.
With friends like these, we never will be.
Tuesday, March 13, 2012
"Mommy, I Don't Want To."
Having recently reached the four year milestone of motherhood, I've heard this phrase, "Mommy, I don't want to..." more times than I could even begin to count. But I've never heard Lily say it. She doesn't sign it. So how does she communicate her lack of interest?
It doesn't happen much. Lily is pretty content to go with the flow of things. If she does have some objection, usually she shows it by not cooperating with an activity. Or by detaching her various trach attachments (a fairly big no-no in our home, go figure). But not last night. Last night was different. Last night was special. Last night was monumental.
Lily decided to show she didn't want to do tummy time on Mommy's chest by... slowly pushing herself into a supported sitting position for the first time ever.
There are no words for how good this feels.
It doesn't happen much. Lily is pretty content to go with the flow of things. If she does have some objection, usually she shows it by not cooperating with an activity. Or by detaching her various trach attachments (a fairly big no-no in our home, go figure). But not last night. Last night was different. Last night was special. Last night was monumental.
Lily decided to show she didn't want to do tummy time on Mommy's chest by... slowly pushing herself into a supported sitting position for the first time ever.
There are no words for how good this feels.
Monday, March 12, 2012
Something to Discover
This morning, I made phone call after phone call. Thirteen unique tasks, all accomplished, with several more for tomorrow morning and a few things forgotten. But out of the first half of the day, a single phrase sticks out more than anything.
"Mommy, Lily wants something to discover."
In a single sentence, Lorelei isolated the magic of my day... watching my daughters discover. And she was right. Lily, who was quite content to be getting ready for the day, lit up when her sister placed a small toy in her hand which Lily then started to explore.
She explored her blanket, her mirror, and her arm strength during tummy time. She explored a little handheld toy until she fell asleep. She explored her princess doll, her hands... and finally, a sucker. Lily explored a sucker willingly, which is a milestone bigger than a first step in this household. Oral aversion is a nasty battle, and Lily decided a sucker was a good first step tonight. I could squeal.
During each exploration, Lily discovered something important. So important that I don't even know how to define it. But to see her eyes glowing with life and her thoughts going a mile a minute, I can definitely tell that her sister knows her heart when Lorelei says Lily wants to discover something. Watching them together, I discover something too.
"Mommy, Lily wants something to discover."
In a single sentence, Lorelei isolated the magic of my day... watching my daughters discover. And she was right. Lily, who was quite content to be getting ready for the day, lit up when her sister placed a small toy in her hand which Lily then started to explore.
She explored her blanket, her mirror, and her arm strength during tummy time. She explored a little handheld toy until she fell asleep. She explored her princess doll, her hands... and finally, a sucker. Lily explored a sucker willingly, which is a milestone bigger than a first step in this household. Oral aversion is a nasty battle, and Lily decided a sucker was a good first step tonight. I could squeal.
During each exploration, Lily discovered something important. So important that I don't even know how to define it. But to see her eyes glowing with life and her thoughts going a mile a minute, I can definitely tell that her sister knows her heart when Lorelei says Lily wants to discover something. Watching them together, I discover something too.
Sunday, March 11, 2012
Studying, Studying
After being thrown off by Daylight Savings Time, Lorelei, Joey and I recovered the day by doing a massive cleaning of two rooms. We've been thinking of having a yard sale for awhile to help streamline the things we're addicted to having around before our eventual move. Today we dealt with the front room and the playroom, the two rooms that most intensely deal with toys. We've been letting Lorelei choose which of her things she keeps or sells, and being that I don't think I've ever let any of her toys leave the house from babyhood, she has a fair few toys that are no longer needed here. Since they are her toys, we're letting her keep the profit from selling them. She's pretty excited about that.
While we did this massive cleaning, Lily hung out with the family in her wheelchair. I love this chair for her because she gets the side support that she really needs. She's doing more consistently grabbing and reaching for her toys when they stay within her reach. It's been really nice to see Lily studying things as though she's trying to answer the deepest questions of the universe... via a doll with a shiny skirt or a little animal from a nativity set. She gets this look in her eye that makes me remember what life is all about... love. Love of learning, love of others... just love. Sigh. I really do learn so much being her mother.
While we did this massive cleaning, Lily hung out with the family in her wheelchair. I love this chair for her because she gets the side support that she really needs. She's doing more consistently grabbing and reaching for her toys when they stay within her reach. It's been really nice to see Lily studying things as though she's trying to answer the deepest questions of the universe... via a doll with a shiny skirt or a little animal from a nativity set. She gets this look in her eye that makes me remember what life is all about... love. Love of learning, love of others... just love. Sigh. I really do learn so much being her mother.
Saturday, March 10, 2012
Envelopes
The mail is an interesting thing, especially in this day of digital communication. Just this week, the mail brought Lorelei eleven little birthday cards in eleven envelopes. It brought bills, notices for people who no longer live at the address where we have resided for nearly four years... and it brought information for Lily's care. All in envelopes, most of them white. Sometimes, the envelopes are bills that have been paid correctly by the insurance; other times there are errors. Some times they are doctors' reports on Lily, with good news, bad news, no news... but every time I open an envelope now, there is a moment of holding my breath to see what has arrived.
Today, it was a quarterly report from Lily's developmental therapist who, sadly, has just recently taken another job. The report is overwhelmingly good, telling me that the advances I've noticed in Lily are not just the over-zealous joy of a mother wishing for the day when her child can do things. Lily has really been progressing. She's made progress in every area listed on this report. In fact, if we adjust for all the time she's been sick (nearly a year if you count out of the hospital too), she's nearly on track for everything except expressive language. For a deaf child who is physically unable to speak because of her trach, this is expected... so the envelope brings great news. So today, we celebrate... and try not to think at all about what the next envelope will bring.
Today, it was a quarterly report from Lily's developmental therapist who, sadly, has just recently taken another job. The report is overwhelmingly good, telling me that the advances I've noticed in Lily are not just the over-zealous joy of a mother wishing for the day when her child can do things. Lily has really been progressing. She's made progress in every area listed on this report. In fact, if we adjust for all the time she's been sick (nearly a year if you count out of the hospital too), she's nearly on track for everything except expressive language. For a deaf child who is physically unable to speak because of her trach, this is expected... so the envelope brings great news. So today, we celebrate... and try not to think at all about what the next envelope will bring.
Friday, March 9, 2012
To the Best Big Sister Ever... Happy Birthday!
Today is Lorelei's birthday. She turned four at 1518 this afternoon. At the exact moment when she completed the last seconds of being three, we were taking family photos and in a whole family pose. She remembers that.
She remembers a lot of things, so much that it really makes a mama think. Lorelei is a sponge, just soaking up information and not even taking the time to ask permission because she craves learning so badly. And so we teach her.
Lorelei has more love to give than anyone I've ever met. And when she's tired enough to slow down, her whole 41.5" body just melts into my arms, cuddling in the perfect ways to see her for the sweet little girl that she is. She loves Hello Kitty and Rapunzel with her magic long hair. She believes in magic.
She believes in her sister. I can't remember the last time a day went by when Lorelei didn't tell Lily that she believes in her. Lorelei cuddles her sister, teaches Lily the value of sharing, and gives more kisses than anyone could count. And still, Lorelei has time to explore the world, asking enough questions to satisfy the curiosity of a brilliant little girl who has just turned four.
I love this little girl so dearly. Happy birthday, my beautiful Princess Pollywog. Thank you for four years of being your mother.
She remembers a lot of things, so much that it really makes a mama think. Lorelei is a sponge, just soaking up information and not even taking the time to ask permission because she craves learning so badly. And so we teach her.
Lorelei has more love to give than anyone I've ever met. And when she's tired enough to slow down, her whole 41.5" body just melts into my arms, cuddling in the perfect ways to see her for the sweet little girl that she is. She loves Hello Kitty and Rapunzel with her magic long hair. She believes in magic.
She believes in her sister. I can't remember the last time a day went by when Lorelei didn't tell Lily that she believes in her. Lorelei cuddles her sister, teaches Lily the value of sharing, and gives more kisses than anyone could count. And still, Lorelei has time to explore the world, asking enough questions to satisfy the curiosity of a brilliant little girl who has just turned four.
I love this little girl so dearly. Happy birthday, my beautiful Princess Pollywog. Thank you for four years of being your mother.
Thursday, March 8, 2012
... And Beyond
We just finished out third of three days in the Disneyland and Disney California Adventure parks. Tonight, we also finish Lorelei's fourth year. When she wakes up in the morning, she will be a four year old little girl, the big sister of a miracle who is just as much a miracle herself.
This trip has been a dream. It's hard not to feel magic in every cell of your body when you spend several days in the happiest place on Earth. Lorelei has been so excited about everything. Hands down, her favorite rides were the rides Lily was also able to enjoy. Her favorite part of the whole trip was to go to lunch at Ariel's Grotto with her sister. (She still thinks it's amazing that her Nonni is friends with the princesses.) Even with the entire Magic Kingdom at her disposal, her favorite experiences were the things we all did together. That, and the tea cups. She really loved those tea cups.
This trip has been a dream. It's hard not to feel magic in every cell of your body when you spend several days in the happiest place on Earth. Lorelei has been so excited about everything. Hands down, her favorite rides were the rides Lily was also able to enjoy. Her favorite part of the whole trip was to go to lunch at Ariel's Grotto with her sister. (She still thinks it's amazing that her Nonni is friends with the princesses.) Even with the entire Magic Kingdom at her disposal, her favorite experiences were the things we all did together. That, and the tea cups. She really loved those tea cups.
Wednesday, March 7, 2012
Friends in Faraway Places
Not surprisingly, when Lily is out in public, she attracts a lot of attention. Most people just look, and most of those with smiles, but every now and again, someone stops long enough to ask. Almost always, we end up with another friend.
This happened a lot today. We ran into the pastor friend of one of our heart transplant friends (Frank), someone we've never met before. We made a new friend from Utah (Michelle), and a new Disney employee friend (Alyson). All of these people instantly fell in love with Lily and her story. It's hard not to. It's hard not to fall in love with a little girl who loves life so much that she'd fight so hard for it.
It also adds a lot to our experience to make these friends, to permanently add to our lives through these shared wonderful experiences. So Frank, Michelle and your two lovely sons, and Alyson, thank you for sharing in our day. It means so much to us.
This happened a lot today. We ran into the pastor friend of one of our heart transplant friends (Frank), someone we've never met before. We made a new friend from Utah (Michelle), and a new Disney employee friend (Alyson). All of these people instantly fell in love with Lily and her story. It's hard not to. It's hard not to fall in love with a little girl who loves life so much that she'd fight so hard for it.
It also adds a lot to our experience to make these friends, to permanently add to our lives through these shared wonderful experiences. So Frank, Michelle and your two lovely sons, and Alyson, thank you for sharing in our day. It means so much to us.
Tuesday, March 6, 2012
Magic Moments
There are moments in life so amazing that just the thought that another magic moment exists is enough to carry you through the deepest trials. we've had some of these as we've gone along on Lily's crazy journey. The kindness of strangers, the loving curiosity of children... Just one more little magic moment.
No amount of these moments could have prepared me for seeing Lily's face on It's a Small World. She lit up like a little girl on Christmas morning. You could feel the joy in her eyes, it was so strong.
Today, this experience, was one of those magic moments that kept me going through her worst of times. And it just feels so full of wonder.
No amount of these moments could have prepared me for seeing Lily's face on It's a Small World. She lit up like a little girl on Christmas morning. You could feel the joy in her eyes, it was so strong.
Today, this experience, was one of those magic moments that kept me going through her worst of times. And it just feels so full of wonder.
Monday, March 5, 2012
The Castle in a Castle
Tonight, we are staying at the Castle Inn and Suites in Anaheim, right across the street from Disneyland. Lorelei still doesn't know what's happening tomorrow, but her sheer joy at staying in a castle is so sweet to me.
In our room, we've set up her castle tent. Our soon-to-be birthday princess is enjoying her castle in a castle experience. Mommy is enjoying her enjoyment and the special way that Lorelei is so eager to share each special detail with Lily.
If my daily life is my castle, these tender moments are my castle in a castle. And they are so incredibly worth the journey it takes to get them.
In our room, we've set up her castle tent. Our soon-to-be birthday princess is enjoying her castle in a castle experience. Mommy is enjoying her enjoyment and the special way that Lorelei is so eager to share each special detail with Lily.
If my daily life is my castle, these tender moments are my castle in a castle. And they are so incredibly worth the journey it takes to get them.
Sunday, March 4, 2012
An Open Letter to the Mothers of Curious Children
Yesterday was Joey's birthday. Lorelei and Lily celebrated by taking Daddy to Home Depot and making some little heart baskets (and yes, Lily made hers, even though it took help and a fair bit of time). Afterward, Lorelei and Lily went to the library with Grandma and Mommy. Then off to lunch with everyone including both of Joey's parents and his brother.
While we were out, we encountered two very curious little girls and two very different parental responses. We get a variety of responses to Lily's condition and they intrigue me.
At the library, a little girl about four years old walked around Lily's wheelchair, sat down next to her at a table to play with the toy sitting on the table. Her mother needed to leave and called her back. The little girl bounced up with a smile on her face and joined her mother. My assumption is that it was just time to leave, but I wish they'd had time in their day for the little girl to explore her curiosity a little bit more. Especially because she didn't even try to touch Lily or her equipment. She was just a happy little girl who saw another little girl for being another little girl. Her response means the world to me.
At lunch, a little girl named Lilly who just turned four was so curious that her mother brought her up to say hello to our Lily. The mother cautioned her not to touch or get to close while holding her daughter's hand. She allowed Lilly to ask her questions and hear our miracle story and the relationship of these two sisters. Lilly learned a few signs and had a lot of questions answered. Again, this experience means the world to me.
I am a better person for meeting these girls. My daughters are better people for meeting these girls. And I'd like to speculate that just a little bit, a very tiny bit, they might be better for meeting Lily.
We don't mind answering tactful questions about Lily's condition. We like to share our journey. We enjoy sharing our miracles. And curious children bring joy to our battles. So, mothers of curious children, if we chance to meet, feel free to share in our joy. We welcome you to the journey.
While we were out, we encountered two very curious little girls and two very different parental responses. We get a variety of responses to Lily's condition and they intrigue me.
At the library, a little girl about four years old walked around Lily's wheelchair, sat down next to her at a table to play with the toy sitting on the table. Her mother needed to leave and called her back. The little girl bounced up with a smile on her face and joined her mother. My assumption is that it was just time to leave, but I wish they'd had time in their day for the little girl to explore her curiosity a little bit more. Especially because she didn't even try to touch Lily or her equipment. She was just a happy little girl who saw another little girl for being another little girl. Her response means the world to me.
At lunch, a little girl named Lilly who just turned four was so curious that her mother brought her up to say hello to our Lily. The mother cautioned her not to touch or get to close while holding her daughter's hand. She allowed Lilly to ask her questions and hear our miracle story and the relationship of these two sisters. Lilly learned a few signs and had a lot of questions answered. Again, this experience means the world to me.
I am a better person for meeting these girls. My daughters are better people for meeting these girls. And I'd like to speculate that just a little bit, a very tiny bit, they might be better for meeting Lily.
We don't mind answering tactful questions about Lily's condition. We like to share our journey. We enjoy sharing our miracles. And curious children bring joy to our battles. So, mothers of curious children, if we chance to meet, feel free to share in our joy. We welcome you to the journey.
Saturday, March 3, 2012
The Blessing of Birthdays
Having Lily in our lives has taught our family that each milestone, each new talent, and any special occasion is something to be embraced, celebrated. Today was Daddy's birthday. The second year in a row that Lily has spent it out of the hospital. After having her first Christmas, first Aster, and first birthday in the hospital, anything we can celebrate at home as a family is a big deal.
Last year, we stood by as a dear friend received her heart transplant. A second chance at life, a million moments with family... And a very special birthday to me.
Last year, we stood by as a dear friend received her heart transplant. A second chance at life, a million moments with family... And a very special birthday to me.
Friday, March 2, 2012
Sharing Rooms
When I was pregnant with Lily, Lorelei was really excited about sharing a room with the new baby. In fact, until we actually brought Lily home from the hospital, her crib was set up in Lorelei's room and we spoke with the proud big sister daily about her baby sleeping in that crib.
Lily has never spent the night in that room. Her central sleep apnea (CSA, a problem where her brain forgets that she needs to breathe) has always required her to be near us at nighttime. The crib sat vacant in the girls' room, being used only for naps. Until Lily went into the hospital in April of 2011 and came out in August with a trach and a vent and required nursing. One of the things that had to change... she needed her own room.
We're lucky in that the house we felt inspired to buy is actually a four bedroom house. One room is completely eaten by Mommy's crafting, but it wasn't difficult to find a room just for Lily. Lorelei, however was devastated. So fast forward seven months... and we don't have nursing. We're currently in negotiations with her medical team about the best situation for the nursing requirement... but even if we have nursing, odds are slim to none that it will be overnight nursing. If it is, Lorelei can spend her nights in our room. Meaning that...
The girls can share a room again! After asking Lorelei if she still wanted to share a room with her sister, and getting a resounding "YES!!!", we moved her in today. Lily will take her naps in their shared room. Lorelei's former room will become a play room, another thing she's pretty excited about. Tonight though... it was just enough to see her on cloud nine to get to go to bed in the room she shares with her sister.
Lily has never spent the night in that room. Her central sleep apnea (CSA, a problem where her brain forgets that she needs to breathe) has always required her to be near us at nighttime. The crib sat vacant in the girls' room, being used only for naps. Until Lily went into the hospital in April of 2011 and came out in August with a trach and a vent and required nursing. One of the things that had to change... she needed her own room.
We're lucky in that the house we felt inspired to buy is actually a four bedroom house. One room is completely eaten by Mommy's crafting, but it wasn't difficult to find a room just for Lily. Lorelei, however was devastated. So fast forward seven months... and we don't have nursing. We're currently in negotiations with her medical team about the best situation for the nursing requirement... but even if we have nursing, odds are slim to none that it will be overnight nursing. If it is, Lorelei can spend her nights in our room. Meaning that...
The girls can share a room again! After asking Lorelei if she still wanted to share a room with her sister, and getting a resounding "YES!!!", we moved her in today. Lily will take her naps in their shared room. Lorelei's former room will become a play room, another thing she's pretty excited about. Tonight though... it was just enough to see her on cloud nine to get to go to bed in the room she shares with her sister.
Thursday, March 1, 2012
The Importance of Play
Lily finally came home from the hospital on Sunday after a twelve day stay. A lot changed... her formula, her vent settings, the plan for nursing care. Overall, we're fairly happy with the results of our admission.
The single biggest memory I have is waking up and seeing Lily independently go to two handed play. I had hung a toy up for Lily using oxygen tubing hung from the IV poles at the edge of her crib. In the pediatric units, they have a child life specialist who tends to the developmental needs of the patients and their siblings. In PICU, our child life specialist is Althea. It was from her that I first got the idea to use oxygen tubing (usually a seven foot nasal cannula with the nasal prongs hidden) to give Lily access to toys that won't fall. It lets her play even if there isn't someone to play with her. Because of this trick, Lily makes milestones instead of becoming further delayed. And our developmental therapist at home, April, teaches Lily to use her hands, to use her interest in different textures... just so much. We love April for all that she does, and the milestones she helps Lily to reach.
Seeing her make those milestones makes her mama cry. I always knew play was important to a child, but never really fully understood it until I watched my sweet baby unable to really play. We've watched her fragile friends grow and do more and more of the things that other children their ages do... and leave Lily in the dust. It's Lily's love of life, her curiosity for anything she sees or touches, and her incredible love of time with her sister, that helps me to step back and see Lily for who she is. She is a miracle.
My miracle has been making leaps and bounds in self started play. She's doing great with playing with her sister. Lorelei loves seeing Lily's interest in new toys and is never shy about playing the gravity game and handing a toy back to Lily again and again.
My baby girl can play. And that is so important.
The single biggest memory I have is waking up and seeing Lily independently go to two handed play. I had hung a toy up for Lily using oxygen tubing hung from the IV poles at the edge of her crib. In the pediatric units, they have a child life specialist who tends to the developmental needs of the patients and their siblings. In PICU, our child life specialist is Althea. It was from her that I first got the idea to use oxygen tubing (usually a seven foot nasal cannula with the nasal prongs hidden) to give Lily access to toys that won't fall. It lets her play even if there isn't someone to play with her. Because of this trick, Lily makes milestones instead of becoming further delayed. And our developmental therapist at home, April, teaches Lily to use her hands, to use her interest in different textures... just so much. We love April for all that she does, and the milestones she helps Lily to reach.
Seeing her make those milestones makes her mama cry. I always knew play was important to a child, but never really fully understood it until I watched my sweet baby unable to really play. We've watched her fragile friends grow and do more and more of the things that other children their ages do... and leave Lily in the dust. It's Lily's love of life, her curiosity for anything she sees or touches, and her incredible love of time with her sister, that helps me to step back and see Lily for who she is. She is a miracle.
My miracle has been making leaps and bounds in self started play. She's doing great with playing with her sister. Lorelei loves seeing Lily's interest in new toys and is never shy about playing the gravity game and handing a toy back to Lily again and again.
My baby girl can play. And that is so important.
Wednesday, February 22, 2012
Pieces of the Miracle Puzzle
Yesterday was a great day. We had a great nurse, Mommy was able to help change the dressing on Lily's PICC (short for peripherally inserted central catheter, basically a big deal IV), and lots of hospital friends came by to comment on how well she is doing and how big she is getting. Two very nice ladies from the Redlands 5th Ward (the local congregation of our LDS church) brought me food. Carissa brought the most delicious tuna melt sandwich I've ever had and a great selection of fruits. Shirley, who just received the news that her daughter can in fact hear, brought some great snacks to keep the munchies at bay while I'm at bedside.
After rounds for me and work for her my friend Nora took me out to Olive Garden. It's our favorite place to get together when Lily is in the hospital. We have a great dinner and run into one of my favorite people from the hospital cafeteria. Then we go to Kohl's to look for some ICU friendly clothes. I was pleasantly surprised to find that they did have one display full of button up shirts for little girls. We picked up the biggest we could find. Then I saw it.
The absolute perfect Easter dress for Lily.
With a big sister style for Lorelei. Just perfect for our upcoming family pictures. I was wanting to do something focusing on tulips as a reference to the essay "Welcome to Holland" by Emily Perl Kingsley. The dresses have slightly blurred tulips of the widely opening variety, with lots of dark green, orange, and purple... all the favorite colors in our family. And it even has yellow and white, which Lorelei will love because those are Nonni's favorite colors.
By this time, I'm beyond thrilled. I'm so excited in fact that I'm telling my cashier about Lily and her story, being in PICU, and the dresses. She feels so moved to help that she takes coupons that other shoppers have given up without using and gives me both $10 and 30% off. The total discount is so much that if I were to compare it to the price of the dresses at their sale value, I end up paying $1.39 for two gorgeous Easter dresses. They retail at nearly $100, and because of the love and inspiration of other people making sales at the right time and returning unused coupons... these gorgeous Easter dresses that mean so much to my family were basically free.
I cried. I'm even crying writing this. It is this type of goodness in the world, bringing meals to the mother of a hospitalized child, opening a home to allow someone access to showerandlaundry, passing along coupons at just the right time... that makes special needs parenting so much easier to bear, each a piece of the puzzle that together makes a miracle.
After rounds for me and work for her my friend Nora took me out to Olive Garden. It's our favorite place to get together when Lily is in the hospital. We have a great dinner and run into one of my favorite people from the hospital cafeteria. Then we go to Kohl's to look for some ICU friendly clothes. I was pleasantly surprised to find that they did have one display full of button up shirts for little girls. We picked up the biggest we could find. Then I saw it.
The absolute perfect Easter dress for Lily.
With a big sister style for Lorelei. Just perfect for our upcoming family pictures. I was wanting to do something focusing on tulips as a reference to the essay "Welcome to Holland" by Emily Perl Kingsley. The dresses have slightly blurred tulips of the widely opening variety, with lots of dark green, orange, and purple... all the favorite colors in our family. And it even has yellow and white, which Lorelei will love because those are Nonni's favorite colors.
By this time, I'm beyond thrilled. I'm so excited in fact that I'm telling my cashier about Lily and her story, being in PICU, and the dresses. She feels so moved to help that she takes coupons that other shoppers have given up without using and gives me both $10 and 30% off. The total discount is so much that if I were to compare it to the price of the dresses at their sale value, I end up paying $1.39 for two gorgeous Easter dresses. They retail at nearly $100, and because of the love and inspiration of other people making sales at the right time and returning unused coupons... these gorgeous Easter dresses that mean so much to my family were basically free.
I cried. I'm even crying writing this. It is this type of goodness in the world, bringing meals to the mother of a hospitalized child, opening a home to allow someone access to showerandlaundry, passing along coupons at just the right time... that makes special needs parenting so much easier to bear, each a piece of the puzzle that together makes a miracle.
Tuesday, February 21, 2012
Fun in the PICU
This has been a very interesting week for Lily. She was admitted to the pediatric intensive care unit (PICU) last Wednesday with pneumonia. Not uncommon for a fragile little girl. Tests were done to verify that her brain shunt is working (it is), that her heart is functioning well (it is), and to see what infections she has. All the while, she's hanging out as the healthiest kid in the PICU, getting bounced room to room and nurse to nurse to meet the needs of the unit. They have some really, really sick kids right now, more so than normal. Lily, however, is being adored by the nurses and doctors with choruses of "She's so big!" and "Six months? You guys are doing great!"
The princess decided to pull a double all-nighter a few days ago, and has been sleeping it off for the last two days. During day one of the sleep fest, Lorelei and Daddy came to visit. We were able to let Lorelei cuddle Lily in the bed while Lily was awake. Lorelei was especially enthusiastic about that since it's one of her favorite things to do at home. Lorelei also left some beautiful artwork on the dry erase board in Lily's room. Her talents as an artist are definitely making themselves known and she is so proud of her work and what it means for Lily. Lorelei was also able to color the pillowcases for Lily's super soft positioning aids. These are called Z-Flo and they are amazing. After coloring with permanent marker and machine washing in hot water, they are pretty cute covers.
Mommy did leave quite a bit on Monday for time with Lorelei. For Mommy-Daughter Monday, we went to a place called Yogurtlicious that is very much like Yogurtland (where we went in Las Vegas). A nice little self-serve frozen yogurt shop. Lorelei really enjoyed choosing her own toppings, especially the edible water beads (aka strawberry boba) and the purple and blue gummy bears. We also took a few other outings in between waiting for the doctors to round.
Lily has been sleeping most of the time since Daddy and Lorelei's visit. Mommy hasn't had too much time to be lonely though. Between medical mama friends and new friends from the local LDS churches, I've been kept in good food with good access to laundry and showers. It also gives me that chance to get out of the hospital and take care of myself. Much needed at that.
The princess decided to pull a double all-nighter a few days ago, and has been sleeping it off for the last two days. During day one of the sleep fest, Lorelei and Daddy came to visit. We were able to let Lorelei cuddle Lily in the bed while Lily was awake. Lorelei was especially enthusiastic about that since it's one of her favorite things to do at home. Lorelei also left some beautiful artwork on the dry erase board in Lily's room. Her talents as an artist are definitely making themselves known and she is so proud of her work and what it means for Lily. Lorelei was also able to color the pillowcases for Lily's super soft positioning aids. These are called Z-Flo and they are amazing. After coloring with permanent marker and machine washing in hot water, they are pretty cute covers.
Mommy did leave quite a bit on Monday for time with Lorelei. For Mommy-Daughter Monday, we went to a place called Yogurtlicious that is very much like Yogurtland (where we went in Las Vegas). A nice little self-serve frozen yogurt shop. Lorelei really enjoyed choosing her own toppings, especially the edible water beads (aka strawberry boba) and the purple and blue gummy bears. We also took a few other outings in between waiting for the doctors to round.
Lily has been sleeping most of the time since Daddy and Lorelei's visit. Mommy hasn't had too much time to be lonely though. Between medical mama friends and new friends from the local LDS churches, I've been kept in good food with good access to laundry and showers. It also gives me that chance to get out of the hospital and take care of myself. Much needed at that.
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