May 8, 2012
My mother-in-law sent our girls in for a photoshoot several months ago and I wanted to post Eliza’s finished product. I cannot believe how much older she is looking. At the beginning of the session she was not willing to open her eyes and I assured the photographer that I was OK even if her eyes were closed in the photo. Toward the end I leaned her back a little and the photographer shot from a ladder, which seemed to do the trick. She opened her eyes big and wide for us. I have very few photos of her sitting up with her eyes open so I was glad that he was able to capture that for us. Luckily, you cannot see me off to the side trying to hold her head up and hide my hand in her hair! It is always a bit of a trick.
May 2, 2012
A BIG THANK YOU TO MUELLER PARK’S NATIONAL JUNIOR HONOR SOCIETY!
For their yearly service project they chose to raise money and collect books for Eliza’s Library. They raised $200, collected books and mailed Eliza a sweet letter. Here is a small portion of it –
…”Recognizing that you are courageously dealing with challenges, we also learned your illness could not dampen your love for books and reading. This information was presented to all of our honor society members. By a unanimous vote, members agreed to support your love of books and reading. It has been the school’s privilege to be able to do this for you.”
Thank you once again! We know that a lot of time and effort was put into this project and we truly appreciate it. We plan on opening another library close to the school and hope the students will be able to see the finished product and be proud of their work.
April 27, 2012
ANOTHER LIBRARY…AND THIS ONE IS ON THE EAST COAST!
Thank you, thank you to the Sereno family for their thoughtfulness and hard work. Their two sons, Sal and Giovanni, both have MLD and they refer affectionately to them as the Sereno Warriors 
! They are definitely warriors alright. Sal just turned 9 and for his birthday they collected 196 books and raised money to place an Eliza’s Library at Roseland Pediatrics in New Jersey! This was such an amazing act of service and love because although we feel connected through MLD, we have never actually met. They are just an amazing family that was looking for a way to honor their brave son and they were sweet to think of us. We truly feel honored. Thank you again Mel, Lina and Sereno Warriors!
I was especially excited that this library was placed in NJ because my parents were living there (temporarily) when Eliza was born, so I have a special place in my heart for NJ. Eliza’s first airplane ride was to NJ when she was just 2 months old so we could surprise my parents with a visit. We created a lot of great memories whenever we visited that beautiful area.
How cute are they?
April 26, 2012
This week was a wonderful time to be a 1st grader! Eliza was able to go on a field trip to the Treehouse Children’s Museum, which was a very fun place. The employees were darling with the kids and had created crafts, acting opportunities and stories that were all centered around fairy tales. Unfortunately, Eliza slept through the entire thing! Oh well, we tried! The kids were thrilled that she was there (sleeping and all) and it was fun to watch them having a great time.
Today was Grandparents Day for the 1st graders, which was a lot of fun too. The kids invited a Grandparent to come to school for a little open house where they were able to give them a tour of the school, read a story to them, eat treats and ended with a couple songs. Eliza’s cousin, Remington, was really excited and thought it was unique for two first graders (he and Eliza) to have the same Grandma.
April 19, 2012
Mother Of The Year here I come (I hope you can sense the sarcasm).
April 8, 2012
HAPPY EASTER!
April 7, 2012
We have some catching up to do!
Our sweet friend Carin invited Eliza and I to be apart of a Mother-Daughter Book Club that meets once a month. I thought this was such a cute idea! The moms and daughters read the book together and then the hostess (the 7 or 8 year old girl) comes up with the questions to ask the girls and an activity that relates to the book. For this month’s club we read Just Grace, wrote postcards to a friend (part of the book) and ate french toast. We had such a great time and it was a fun way for Eliza to meet some other girls her age.
Eliza’s oldest cousin, Anderson, just left to serve a church mission for two years in Kobe Japan! We are certainly going to miss him but we are excited for the wonderful experience he is embarking upon. He is going to do amazing things.
Spring Break in St. George! My sisters and I spent some time at my parent’s house in St. George with our kids this past week and we had a great time. Our husbands were only able to spend part of the time with us so we spent a lot of time chasing around 7 kids (6 girls and 1 boy) all 7 years and younger. Of course, Caroline was the crazy one of the bunch that kept us on our toes. We had a great time swimming, golf ball “hunting”, going to the park, spending a day in Las Vegas shopping and seeing the animals at the Mirage and soaking in the sunshine. Here is a picture of Eliza with her youngest cousin, Emily. She was a great babysitter!
Another highlight was doing some hiking in Zion’s National Park. Of course this is a little challenging with Eliza’s stroller but we got her as close to the action as we could. She was pretty tired anyway
March 15, 2012
More wonderful friends! I am slow posting this exciting news – Eliza’s 34th Library was placed in Alpine Pediatrics! I cannot take any credit for this because all of the work was done by some very sweet and generous friends. We met Toni and Steve Moncrief a couple years ago and they have contributed in many ways to Eliza’s Library ever since. They have organized multiple book drives, purchased books to donate and now a library. They are wonderful, wonderful people! They are so sweet to take on this project during a time where they have had a lot going on – a broken wrist, new grand baby (featured in the photo) and work. We truly appreciate their thoughtfulness, generosity and the time they put into this library. Thank you once again!
March 7, 2012
Miss Eliza turned 7 years old on Sunday and we have been celebrating every since! It is such an incredible milestone for her and for our family. We cannot believe she has been with us to celebrate so many wonderful birthdays and as one friend commented last night, “Eliza is about 49 years old if you count all of her monthly birthdays!”
On Sunday, we had our parents over for dinner and cake to celebrate the actual day, on Monday we celebrated at her school with Kit Kats (hers was blended up with her food) and last night we had a little birthday party with some friends and family at Jump Around Utah. Eliza was so excited that she would not sleep the entire day but she managed to stay awake the entire party. It was a wonderful night celebrating our amazing girl.
February 16, 2012
Caroline is a very loving sister and Eliza is VERY patient with her. Caroline loves brushing Eliza’s hair, giving her kisses and listening to movies/music/books with her. Last night we all went in Eliza’s room to read a few stories to help the girls wind down before bed. Caroline immediately climbed up on Eliza’s bed and laid down next to her. She looked over at Eliza and said, “My your best friend.” Translation = you’re my best friend. Those were some of the sweetest words I have ever heard. What a wonderful way to end the night.
February 15, 2012
Happy (belated) Valentine’s Day! Eliza had a wonderful Valentine’s Day with a party at school, gifts from a lot of loved ones and an evening with Grandma and Grandpa. Callahan has always given Eliza balloons for Valentine’s Day, which is always a hit. We hope you had a wonderful day celebrating with those you love as well.
Eliza’s Valentine’s from her friends at school
Eliza with two of her secret admirers!
February 7, 2012
THANK YOU, LANDON! ELIZA’S 33RD LIBRARY!
The amazing Drewes family has done it again! Their son, Landon (pictured on the far left), placed an Eliza’s Library for his Eagle Project. His family and friends joined him on Eliza’s 6 year and 11 month birthday to place it in the Now I Can Physical Therapy Center – www.nowican.org. This will be a very fun spot because the facility helps children with various disabilities through a unique intensive physical therapy. It always touches my heart to know that children like Eliza will be able to enjoy these books. THANK YOU LANDON for doing all of the leg work for us. We truly appreciate your thoughtfulness, generosity and the time that went into your project.
February 6, 2012
After basically an entire month of being sick…we are finally healthy again! Eliza came off her oxygen in the middle of January, had a short break and then her sister shared a flu bug with her. Luckily, it was a quick one and she is now back to herself again. It is so nice to be sleeping again at night. We felt like zombies throughout January. We are hoping that is the end of sickness for the winter.
I took Eliza back to school today and I wish I had a camera rolling as we walked into her classroom. The kids started cheering when they saw her! It was so sweet to see them so excited. She received several hugs and ‘I missed you’ as we walked to her desk. Kids are so wonderful!
We starting our countdown to Eliza’s 7th Birthday next month!!! It seems so strange to even say that number – it sounds so old. It is hard for me to believe.
January 25, 2012
NEW ELIZA’S LIBRARY IN COLORADO! The Sheraton in Steamboat Springs, Colorado has done another wonderful service project and Eliza’s Library was the beneficiary. They collected over 600 books and donated $650 worth of furniture to a new Eliza’s Library located in the Advocates Building Peaceful Communities facility. This is Eliza’s 31st library! Advocates serves individuals that have been victims of abuse and violence through counseling and education. In many cases, these individuals bring their children to the facility when they are receiving services. This will be a wonderful way for these children (who have also been through so much) to relax and enjoy their time while they are waiting.
A BIG thank you to the employees at the Sheraton and the residents of Steamboat Springs. I was so excited to hear that this will be an ongoing project for the hotel and I am so grateful and appreciative of all the time and effort that was put in to this project. I think service like this speaks volumes about what sort of company the Sheraton is. THANK YOU, THANK YOU!!!
Article: SHERATON STEAMBOAT RESORT HELPS CREATE CHILDREN’S LIBRARY
January 21, 2012
One of the blessings of our experience with Eliza is meeting other amazing parents with children with special needs. Some of them we have never met face to face but because we can relate to each other, it is like we have been friends for a long time. There is a completely different level of understanding when their child is experiencing the same things as Eliza. Not that others cannot empathize and be amazing because we have a lot of people like that in our lives as well but there is nothing like another parent whose heart feels the same tender and very difficult things that mine does.
Three of these amazing people are Kristi, Quinn and their darling daughter Lila. I actually grew up in the same neighborhood as Kristi until I was in jr. high. Since I was several years older we had not seen each other in over 10 years. About one year ago a mutual friend was telling me that Kristi’s daughter was having some sort of neurological issues as well, which always breaks my heart when I hear this. Finding Lila’s correct diagnosis was extremely difficult. The neurologists essentially performed every type of test imaginable and they were reaching the end of the list. Kristi had read about a rare disease called Vici Syndrome and brought it up with the neurologist. After the neurologist did some research (because he had never heard of it), he agreed that this most likely was the correct diagnosis. It is a rare and terminal genetic syndrome that impacts every aspect of Lila’s life. This disease is even more rare than MLD with only 50 documented cases in the entire world, which complicates things even more for her sweet parents.
Through it all, Lila has been amazingly strong and she is a joy to be with. We were lucky enough to spend the afternoon with Kristi and Lila yesterday and we had a great time. Caroline was SO excited for “Baby Lila” to come over and play and she kept telling me that she wanted to share her toys with her. It was wonderful have two angels in our home at the same time.
As we were saying our goodbyes, Kristi put Lila down on the couch by Eliza. Lila’s hand came over and immediately grabbed on to Eliza’s finger. It was such a sweet sight. The most delicate little fingers holding on to one another. And anybody who remembers my story about how Eliza loves holding on to baby fingers can imagine how fun it was. In my head I could hear Eliza’s voice from over 4 years ago saying, “She likes me, mom. She likes me!” And we love her too!
January 19, 2012
A princess for the day ~
Make-A-Wish Utah has an amazing event each year where the wish kids are invited to a princess party. The girls from the Distinguished Young Women program dress up as princesses and escort the little princesses through the party. They have treats for a tea party, dancing, games and cute little prizes for the little princesses. Eliza was still sick with pneumonia when the invitation came earlier in the month but we sent in our RSVP and thought that would be good motivation for her to feel better. It worked! Eliza came off her oxygen for the first time yesterday and off to the party we went.
The wish kids are also allowed to bring siblings to the party so Caroline was in heaven as well! She was swept away by a princess the minute we walked in the door and she bounced from the treats to the dance floor for about one hour. Eliza had some very sweet and sensitive girls that took care of her and made her feel special. They twirled her stroller in circles during the dance and Eliza was especially excited when Prince Charming came over to dance with her – that girl has ALWAYS loved boys!
It was a wonderful afternoon! Thank you to our sweet friend Terri, the Make-A-Wish staff and the Distinguished Young Women for making my girls feel like princesses after a very long month.
KSL News Story
This is our sweet friend, Terri. She was one of Eliza’s wish grantors and she has been an amazing friend ever since. She was in charge of this event and she always does an amazing job. I almost started to cry when we were talking and she pulled her sleeve up to show Eliza how she still wears her Courage bracelet that she got at Eliza’s birthday almost 4 years ago. The color is completely gone but she wears it to support our sweet Eliza. Thank you Terri! You have a special place in our hearts.
January 17, 2012
Eliza is continuing to do well with a minimal amount of oxygen. However, her sleeping schedule is getting even more bizarre, which is keeping me on my toes. She will have days where she wakes up at her usual time but then falls back to sleep until 2:30 in the afternoon, days where she stays awake majority of the day and then some crazy nights where she wakes up around 4:00 am. Needless to say, ALL of our sleep schedules are a little messed up right now.
We have been able to get out of the house a little bit so we don’t go too stir crazy. We are still staying away from school, church or any other place with a lot of people in small spaces. The last thing we need right now is another cold or flu bug. So, we have been enjoying a lot of down time, which is usually spend reading books, listening to music and listening to movies.
Our best outing was to Build a Bear. We went one evening and essentially had the entire store to ourselves. The girls had received gift cards in their stockings and they were excited to cash them in. After watching Caroline bounce around the store like a pinball for about an hour we walked out with “Missy the Monkey” and “Betsy the Bunny.” When we asked Eliza what she wanted to make she responded to monkey and Utah Utes. So she has a new cheerleader bunny that is nice and soft to snuggle with.
Caroline has been a really good sport, especially considering that she has been cooped up a little more than normal. She is always sweet to check on Eliza, compliment her “big coughs” and give her kisses to help her feel better. Just minutes ago she went over to Eliza and said, “I have a kiss for your oxygen!” What would we do without sisters?
January 12, 2012
I feel like we are catching our breath a little around here so I am finally posting the amazing deeds done for Eliza this Christmas. It is always amazing to see the bottom of Eliza’s Tree covered with multicolored cards and envelopes from such amazing individuals. As always, Eliza’s eyes lit up as we talked about who the letter was from and what kind of service was performed in her honor. Each card was so sweet and heartfelt and we appreciate you taking the time to participate with us!
I am always amazed by some of the unique and thoughtful ways people think to serve others so I wanted to post an anonymous list of the acts of service performed. I know I want to remember these and do many of them myself too.
ELIZA’S TREE 2011
A 6 year old gave his tooth fairy money to a little girl in need of a heart transplant * Provided Christmas to 3 families * The young children in this family performed chores around the house to earn money, which they used to buy items to donate to the YWCA * 12 Days of Christmas for a deserving family * * Pledge to visit patients in the hospital throughout the year * A generous donation to Eliza’s Library * 2 missionaries continuing to be obedient and faithful missionaries in Denmark and Italy * Greeting each person I meet throughout the day with a smile * This family decorated a tree for the Festival of Trees in honor of their three children that suffered from MLD. It was a book themed tree and they included Eliza’s favorite book in honor of her * Visiting an elderly neighbor * Being nice to my little brother and not getting mad when he takes my toys * Buying extra gifts for a family in need *Always trying to have a positive attitude * Buying Temple clothing for 2 friends *Making Christmas cards for my grandparents * Helping my sister with the dishes * Buying 3 toys with my own money and donating them to Toys for Tots * Bake cookies for neighbors * Baked and sold cookies to neighbors, which paid for 3 Eliza’s Libraries * Taking gift baskets to neighbors * Paying for the cars behind me in drive-thru lines * Trying to be a little kinder, more forgiving, a little more helpful and a little more loving to those we come in contact with * Paying for my brother’s dental implants to give him a new smile * Taking care of an elderly mother, serving on a committee for the “Day of Giving” and volunteering as a nurse for LDS family services * Donating stickers, bubbles, markers, books, puzzles, cars, hair clips and a cute little dolly to Primary Children’s Hospital * Clean up after my dog and keep a good attitude * Raising money to pay for headstones of little babies that have passed away * Lending a hand and cleaning without being asked * Reading to my little brother and donating toys to kids that don’t have any * Donating books to Eliza’s Library * Make and donate blankets to the hospital * Helping those without vehicles run errands * Strive to be a better listener * Go Christmas caroling * Make a quilt for returned veterans * Performing Temple Ordinances * Be a better Visiting Teacher * Shovel my pregnant neighbor’s driveway * Read books to my children * Filled and sent packages to missionaries * Watching my friend’s daughter for free * Giving my brother rides to work after his car broke down * I will give my school friends a hug when they are feeling sad and tell them that friends help to make sad feelings go away
See what I mean? People are amazing! THANK YOU!!!
January 9, 2012
Last time when Eliza had pneumonia the turning point seemed to come after one week. We are at the one week mark now and I think I am beginning to see the same thing. She is still on oxygen but her coloring looks good and she is breathing well. I was suctioning her quite a bit in the beginning and now I do it once a day at the most. Every once in a while she moves her head and shifts the oxygen cannula out of her nose, which sets off her alarm (not a fun way to be woken up)! Without oxygen she is able to maintain her levels for a bit but they eventually drop so I imagine we will need to keep her on oxygen for the week or so. It isn’t fun having her tethered to tubes and a monitor because it is difficult to hold her but if it helps her rest comfortably it isn’t a big deal. I have enjoyed my time laying next to her and reading countless books, listening to music and chatting with her.
I think our little stubborn fighter is going to kick this pneumonia again! Yay, Eliza!
January 2, 2012
HAPPY NEW YEAR!!!
Just a few days ago I had commented that I would not be sad to see 2011 go because it was quite the year of challenges – it almost beat the year of 2007 as our worst year. 2012 had to be better, right? Well, we started the year off with Eliza waking up at 2:00 am on New Years Day with a fever, high pulse and a low oxygen reading. Both girls had been fighting a cough/cold but I felt as though they were both on the mend. After some suctioning and oxygen I was able to get her back into the normal range but I knew a visit to the doctor would be in our future. We always seem to have health problems in the middle of the night, on the weekend or holidays. This was no exception because of New Years.
We have a great children’s hospital nearby but the longer we live with MLD and watch Eliza, we know that this is not the place any of us want to be if we don’t absolutely have to. She is always more anxious and it is difficult for her to relax and sleep whenever she is admitted to the hospital. There is always a noticeable difference when she is home. Because of this, we opted to work with the on call pediatrician and the staff at Instacare rather than going to the ER. The x-ray showed that she did have pneumonia in the exact same spot as last time in October.
The doctors were great to work with us and allowed us to make the decision on how we wanted to move forward. We decided to get Eliza a shot of Rocephin and then we were sent home with two other antibiotics to treat the pneumonia. So far, Eliza is doing great. We have our “mini hospital” set up in her room with all sorts of machines, that no 6 year old should have to deal with, but I am grateful for them nonetheless. She only woke up once last night to be suctioned but otherwise she slept soundly and has been asleep most of today as well. Her breathing sounds great (knock on wood) and we are hoping to kick this pneumonia again.
Oh, I almost forgot to mention the semi-humorous part of kicking off this new year. Since we were home bound, we decided to be productive and put the Christmas tree away. When we walked into the storage room we were greeted by an overflowing water heater that needs to be replaced. SERIOUSLY!!! We were mad until we found that the previous home owner opted for a long warranty so it was partially covered. Whew! I don’t know if we should be nervous about waking up tomorrow The first day = pneumonia. The second day = broken water heater. What else could be in store for the Williams family? I shouldn’t even ask.
December 27, 2011
What a wonderful Christmas –
December 23, 2011
One month ago, a dear friend of mine gave me some very sweet gifts. She gave me a little statue of an angel holding two little girls (which Caroline LOVES) and a framed heart that was very special to her. She found the heart after she lost her 16 year old son in a very tragic accident – he would be my age today. It was a little difficult to photograph but if you look closely you can see that the inside of the heart has cracks and breaks but the heart is still intact. She related this to mine and Callahan’s hearts and said, “I know that your hearts have broken many times but that doesn’t mean that it isn’t still whole.” I thought it was a beautiful message.
It is true, there are so many little experiences that happen in life that can crack our hearts – sometimes big and sometimes small. We might even wonder how many cracks it can take before it shatters. However, no matter how many cracks our hearts have, we can still be a whole person that can love fully. Thanks for the reminder, Susan
She also forwarded a scripture to me that I love. I think I will have to hang this on my fridge so I can see it each day.
“…let us run with patience the race that is set before us.”
Hebrews 12:1
December 21, 2011
Eliza has been on a strange schedule lately. She usually sleeps well but for the past 10 days or so she has been waking up a lot in the middle of the night. Some nights she falls asleep quickly and other nights it takes a while to get her comfortable. She has been more congested at night and in the morning and I don’t know exactly why. It could be the progression of the disease, it could be the inversion that is making our air yucky or it could be because she isn’t moving enough to break it up and work it out. Whatever the reason, I have had to suction her every morning, which I have never had to do consistently. Once she is suctioned and she gets a few good coughs she is fine the rest of the day, which is good. Hopefully it is just a temporary thing and she will be back to her usual sleeping schedule.
December 15, 2011
A few weeks ago I decided that I was long overdue for a pity party and I decided to throw one for myself! I don’t feel like I need them very often but sometimes things catch up to me and I just need a moment to feel the frustration. I recognize that our lives could be very different if some of our challenges never occurred. I try not to dwell on it because I know that it does not do me any good but every once in a while I take a look around and think, ‘Wow, how would it be if Eliza could get up and play with her sister’ or ‘wouldn’t it be easier to get stuff done if I didn’t have to haul diapers, medicine, food, strollers, burp cloths…with me everywhere I go.’
It’s true, life could be easier but then I also recognize that if I didn’t have these challenges, I would certainly have other challenges to deal with. When I came out of my pity party I came to the conclusion that I usually do – my challenges truly are the things that have taught me the most and hopefully made a little bit better than I would have been without them.
I read Part 2 of Welcome to Holland a while ago but I never posted it. I think it is pretty insightful and summarizes some of the things I have experienced as well.
“I have been to Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger – the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.
Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land.
Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways, too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.
I have come to love Holland and call it Home. I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!”
-Anonymous
December 13, 2011
It seems strange to think that Callahan’s accident happened six months ago. He may not always agree with me but it is amazing to see how far he has come. When I got to the ER, he was not able to move anything. He was is tremendous pain because his muscles were cramping up from the riding. He was constantly asking me to move his legs and arms in attempt to make him feel better.
I put a little slideshow together for him about 1 month ago that shows how far he has come. Here is my “Ode to Callahan:)”
December 7, 2011
I am finishing up my service project for Eliza’s Tree and it just occurred to me that I failed to write a post about it. For those that have never heard about our Eliza Tree tradition please read the article below. It has become our favorite part of Christmas morning and we look forward to it all month long. We would love to have you participate with us. Thank you!!!
Eliza’s Tree
If you would like to participate please mail your letters of service to
Eliza’s Library
90 W. 500 S. #118
Bountiful, UT 84010
December 5, 2011
The Drewes, Brown and Jacob families are at it again – just being their generous and sweet selves! Over the weekend they opened another Eliza’s Library at the Utah Valley Hospital in the Rock Canyon Pediatric office. They did this in honor of Eliza’s 6 & 3/4 birthday, which was yesterday! We cannot thank them enough for their thoughtfulness toward our family, especially Eliza. Not only have they opened two Eliza’s Library but another one is in the works as part of an Eagle Project. That library is going to be placed in a physical therapy facility called Now I Can (www.nowican.org), which serves children with various disabilities. It will be another wonderful location to have. Thank you once again to these sweet families. We truly appreciate all the time and effort that went into this project.
November 29, 2011
It’s time for teamgive’s annual Christmas event with Santa Claus & Modern Display!!! We had a wonderful time last year and we hope you can attend again. Bring your children or grandchildren to visit with Santa Claus and have their photo taken. We will also be collecting books for Eliza’s Library if you would like to contribute to that. We hope to see you Saturday!!!
November 23, 2011
“FOR EVERY MOUNTAIN THERE IS A MIRACLE.”
This Thanksgiving season we are especially grateful for the miracles we have witnessed in our lives. We are grateful for the miracle of health, the miracle of tender mercies and the miracle of family and friends. We cannot thank you enough for your continued love and support. We are thankful to have you in our lives. Love The Williams Family
Thank you to the amazing Carin Davis for being sweet enough to photograph our family…again! She is so talented that she even made it appear as though Caroline was cooperative for the photos, which she was not
October28, 2011
HAPPY HALLOWEEN! Today Eliza was able to finally go back to school after a very long absence. It was a perfect day because it was the class Halloween parade and party. She dozed off and on but I think she really was happy to go back and it was fun to see her class so excited to see her.
Here are some photos of Eliza in her Halloween costume. As I was looking through the photos I realized that we always pick costumes where shoes are a very important part of it. This is ironic to me since shoes are tricky with her narrow and pointed feet. Here is to another fun Halloween with great shoes!
October 25, 2011
GOOD NEWS — Eliza has been off her oxygen all morning/afternoon and she is doing well!!! It is so wonderful to see her comfortable and breathing well. Way to go amazing girl. Looks like we might be able to make it to the school Halloween parade without hauling the oxygen along!
Yesterday my sister and I took our girls out to Gardner Village to see the witches they have on display for Halloween. The weather was beautiful and it was fun to get outside. My sister is always a good sport to go on “field trips” with me and help me keep track of Caroline. She enjoyed running into the little boutique shops (especially the doll store) that were tricky to maneuver Eliza’s stroller through. Thank you, Emily for chasing my child!
Speaking of Miss Caroline. I have decided that this little girl needs to be a nurse when she grows up. Hospitals and doctors have been a regular part of life lately and she loves talking about it. For several months after Callahan’s accident she had a series of questions that she asked him EVERY time she saw him – “You fall off your bike? You hurt your neck? You have an owie? You go to the doctor.” I am not kidding, every time she saw him. He started wondering if she would every talk to him about anything else . Now, her focus has switched to Eliza’s hospital experience. ”Eliza’s sick? She go to the hospital? See the doctor?” One morning she was being especially compassionate and said these words to Eliza, gave her a kiss on the cheek and quickly offered Eliza her favorite blanket. What a good little nurse!
October 23, 2011
On Thursday night Eliza really turned the corner and started sounding much better. Right before she fell asleep that night she had several huge coughs that seemed to completely clear her lungs. She has sounded great ever since. She isn’t retracting when she breaths any longer and she has been sleeping through the night – thank goodness!!! She is still on a very small amount of oxygen but I am hoping that will be done this week. I turned it off yesterday to monitor her and her numbers dipped so for now we will keep her on it. It doesn’t bother me if it helps make her more comfortable.
We have dodged another bullet! Thank you for all of the thoughts, prayers and kind acts that were performed on our behalf. We are grateful to have such amazing people in our lives. THANK YOU!!!
October 19, 2011
WHAT MORE COULD WE ASK FOR? THANK YOU!!!
This magnet was given to Eliza by some of our very favorite people. They have always been there to help our family and love our girls. Thank you Geurts family!
We are so grateful to have such wonderful family and friends that continue to come through in amazing ways to help us. We look forward to the day when we can be the ones who give more instead of always receiving but we truly appreciate the thoughts, concern and help.
October 18, 2011
We try to keep our lives as normal as possible around here so last night our family took our annual trip to the pumpkin patch…oxygen and all! We had a great time and Caroline did a wonderful job picking out pumpkins for Eliza and herself.
Eliza had a little bit of a rough night last night but I don’t think she was aware of it! The alarm on her pulse oximeter went off 6 times before 3:00 am and after that I lost track. When I went into her room Eliza was sleeping soundly through the alarm. After I repositioned her the oxygen reading would go back up to the normal range and I attempted to go back to sleep – didn’t happen! I was just glad that she was able to sleep soundly. Today I was able to drop her oxygen down to .25 liters and she maintained her levels. Another step in the right direction.
October 17, 2011
Life just doesn’t seem to get dull around here! Last week we took the girls to Disneyland with some of my siblings and nieces and nephews. We had a great time! We went to the beach, swimming, Disneyland for 2 days and enjoyed being in one another’s company. Eliza was really tired for most of the trip but that isn’t unusual when we travel. However, on one of our days I commented to Callahan that her coloring did not look great but she seemed to be doing fine. Since she was so sleepy she spent a lot of the time in her stroller because we didn’t want to bother her. When she was awake she was able to go on several rides – Dumbo, the train, It’s a Small World, Carousel, the Haunted Mansion, Peter Pan and last but not least, Captain EO (her dad’s choice).
We got back home on Wednesday night around 10:30 pm and by 11:00 we were on the phone with the pediatrician’s office. She had some congestion in her chest, her coloring was off and her oxygen level was a little low. We have a pulse oximeter and a suction machine at home (we rarely use but have on hand just in case) but we didn’t have oxygen. We decided to take her to the ER where we hoped we would receive an order for oxygen and be on our way. By the time we got to the ER her oxygen level was 71! The staff moved into action quickly and before I had even given them our insurance card she was being poked for an IV, put on high flow oxygen and a chest X-ray had been ordered.
The X-ray showed that Eliza had pneumonia in her lower right lung. We were surprised because she hadn’t been sick and her breathing didn’t sound too alarming. Since she required the humidified high flow oxygen to maintain her levels we were admitted to the PICU. During our stay she was given two antibiotics that would essentially kill any infection in her body. During her two day stay in the PICU, she responded well to the high flow oxygen and was able to be weaned off and changed to regular oxygen, which meant we were moved to a regular room in the hospital. We stayed one more day and she was discharged yesterday afternoon. The care and staff were excellent but we were excited to be home.
Eliza is still on a minimal amount of oxygen, which will most likely last for a week or so. From there we hope she will be able to keep her O2 numbers up so we can discontinue the oxygen for now. Since the pneumonia was detected relatively early we hope that it has not taken too big of a toll on her fragile body. Pneumonia is the word that MLD parents do not want to hear. We feel fortunate that this is our first encounter with it and we hope it will be our last for quite some time.
Thank you for all the sweet comments, emails and prayers on Eliza’s behalf. We know that is the reason she continues to do well and beat the odds. We truly appreciate it.
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Callahan update: I haven’t posted an update on Callahan for quite some time, sorry! He is continuing to do well and make progress although he would tell you that it has slowed down significantly. He was given the go ahead to take his neck brace off, which he was very excited about. Early on I would joke with him and say that he would miss that neck brace someday and now he says his head feels really heavy by the end of the day without it.
His walking is looking much better but he does tire really easily. The more tired he gets the more his gait slips and you can tell that he has had some sort of injury. As you can imagine, Disneyland was the ultimate physical test for his body. We did a lot of walking and he did really well. Every so often he would make a comment like, “I cannot feel below my knees” or “I cannot move my fingers any more,” but he kept plugging along and never complained. He wanted to do it for the girls.
His hands continue to frustrate him because his fine motor skills are still coming and the fine tuning can take years. By mid-day it isn’t unusual for his hands and fingers to “lock up” and not work for the remainder of the day. This poses a problem for somebody that is constantly typing on a phone or computer. It is also saddening because it is difficult for him to hold our girls. He is able to hold Caroline if she stays still, which rarely happens, and he isn’t strong enough to hold Eliza. I know this breaks his heart.
He is becoming more acquainted with muscle spasms that cause tremendous pain and often wake him up at night. He doesn’t have much of an appetite and has lost 30+ lbs (he didn’t have any weight to lose in the first place).
There are still good and bad days but overall he has handled this extremely difficult challenge well. He has had an awful lot put on his plate and things continue to pile up. I can’t think of many 32 year olds that have been asked to go through some of these things and I glad he has chosen to step up to the plate rather than feel defeated. I couldn’t be more proud of him.
September 23, 2011
Eliza’s 28th Library!!! I am constantly amazed by the goodness of people. Their actions and thoughtfulness truly motivate me to be a little more like them – I constantly fall short but I’ll keep trying! I was contacted by a mother that heard me speak at a Women in Business meeting several months ago and she expressed interest in opening an ‘Eliza’s Library’ down in Utah county. The cutest part is that her children, along with the children from 2 other families, were going to perform a service project to raise the money for it. I loved this idea! It is easy to think about service opportunities around Christmas time but how many of us think to do this in the middle of a crazy summer? I don’t know if I would. What a fun way to create memories with children and teach them to look outside themselves and do something for another. I want to adopt this tradition and do something similar with my girls.
For their service project they sold over 400 cookies and bought the furniture for the library – a bookshelf, table, chairs, rug and frame. Each child also chose a book that they wanted to donate to the library. These families did all the fundraising, shopping and set up by themselves. Since our summer was crazy I was absolutely no help. They are amazing!
Callahan had his follow up appointment with his neurosurgeon on Tuesday so we were able to stop by the Utah Valley Pediatrics office in the Timpanogos Hospital and see the finished library. It was wonderful to spend some time with these sweet children and thank them for everything they did. The office space is darling and they did a wonderful job matching the decor. THANK YOU ONCE AGAIN TO THE BROWN, DREWES AND JACOB FAMILIES! We appreciate all you have done for Eliza and our family.
September 19, 2011
Today was another great day in 1st grade. The kids are so sweet and kind to Eliza, which makes my day. They are becoming more and more comfortable with her and interested in what we do at school. Any time I pull out her tube and syringe to feed her there are several pairs of eyes on us. They like to ask questions about what she is eating and if she likes it. They are fascinated by the fact that she will blink her eyes to communicate “yes.” In fact, today a little boy kept coming over to her and asking her questions to see if she would blink…and she did. ”Eliza, what color should I use to draw my box?” She blinked for green. ”Eliza, what should I draw in my box?” She blinked for a spider. This boy was completely blown away and it was hilarious to watch.
Another sweet girl in her class had all of the kids sign their names on a piece of paper for Eliza. She asked me to sign it near the end and said, “Don’t let Eliza find out!” It was very sweet. On the front she wrote – TO ELIZA (with a backwards z) FROM the HOLLE CLLASS. We are quickly filling up Eliza’s magnet board in her room with drawings from her cute friends.
Just like last year, the kids like to help push her stroller around the halls and out at recess. Normally, Eliza and I walk around the playground while the kids play but she is gaining quite the following. Kids from our class and kids we don’t even know will come walk with us. I feel badly that they are missing their recess time walking so we usually make our way over to the playground where they show off their skills on the monkey bars for us. Today we were going past a little soccer field area and one of the boys walking with us was invited to play soccer. He said, “Not today. I am walking with my friend, Eliza.” It was very sweet.
September 11, 2011
Like many others, I will never forget the morning of September 11, 2001. It was less than one month before we were getting married and we had just been in Manhattan a little over one month before these horrifying events took place. We stayed a couple blocks away from the World Trade Center and I remember being amazed by the size of those buildings. I had never seen anything like it. The steel beams at the bottom alone were enormous. Callahan asked me if I wanted to go up to the top but I declined and said, “Maybe next time.” I was shocked to see those same buildings tumble to the ground just 5 weeks later into a pile of smoke and ash. It was beyond disturbing to learn more and more about the horrible plot and terrorist attack that had just taken place.
The saddening feeling of September 11 took on an additional meaning 4 years ago. Callahan and I were sitting in an exam room in the neurology clinic at Primary Children’s Hospital. Eliza had already been given multiple misdiagnoses and I assumed that we were waiting to hear about one more. I wasn’t worried because until this point, all of the diagnoses had improved with each one. I thought I would be given one more difficult name to say, more ideas for therapy and we would be on our way. However, I knew the moment that I saw the neurologists face that this was not the case. I felt as though my entire world was caving in on me and I couldn’t even breathe. I was hearing about a new diagnosis that had no cure, no treatment and essentially, no hope. I will never forget how I felt and I hope to never feel that way again. It was absolutely surreal.
The future for Eliza was one big depressing question mark from that point on. We had been told that most children pass away before the age of 5 but as we researched and read more we kept coming across children that were passing away at 3 and 3 1/2. At this time, Eliza was 2 1/2 and I couldn’t bear the thought of losing her within 6 months or so. The doctor gave us some information about MLD but since it is so rare there were only a few things to look through. We had no idea where to turn. If a doctor couldn’t help us or give us more information than this where were supposed to go?
I am grateful that people were placed in our ability to cope with this new way of life seemed to come together. Obviously, it was not always an easy or happy journey but we knew that we were being helped in many ways and that things were going to be okay.
In some ways it seems like a lifetime ago and in other ways it seems like yesterday. We have known Eliza for this way for 4 years and we only got a 2 1/2 year glimpse of Eliza before MLD. I will forever be grateful that I was able to have that time with Eliza. To hear her voice, see her move and watch her grow was amazing. It is even more amazing to me now. But most of all, I am grateful to still have our little girl with us. She is truly amazing and such an example to me. I know there are many things that I am supposed to learn from Eliza and this experience. I know that because of her example our family will never be the same and I know we will be better because of this. I love you sweet girl!
September 8, 2011
Eliza has had a few loose teeth for quite some time but since she doesn’t eat by mouth they don’t loosen up very quickly. One on the bottom has been especially loose but I have been too big of a chicken to pull it. Today we were re-reading Junie B. Jones First Grader: Toothless Wonder and I looked at Eliza and said, “Let’s try wiggling that tooth.” I moved it back and forth a couple times and it fell right out. Now Miss Eliza has lost 4 teeth and she truly is beginning to look like a “toothless wonder!” 
August 30, 2011
Last week was a fun and busy week for our family but the end of the week ended up being a little rough for Eliza. Like other MLD kids, she had a few days of unexplained vomiting and increased seizures. This has happened before and we usually just have to ride it out for a couple days and then things get back to normal. Needless to say, we had to miss some school but she was back to herself on Saturday…just in time for her sister’s Fancy Nancy birthday party! (The guest of honor wouldn’t cooperate for the photo but she was very fancy as well).
When we came back to school this week the kids seemed a little more comfortable around her. The teacher had told them about Eliza while we were gone and that usually breaks the ice and helps them not be nervous around her. Yesterday a little boy in the class came up to us while I was feeding Eliza and he was asking questions about her and the feeding tube. After I answered a few of his questions he paused and said, “Oh, this is Eliza. I know that she cannot use her legs and her arms and she cannot see.” It was the next thing that melted my heart. He asked, “Would she like to be my friend?” Of course I answered yes and he went running off to tell the teacher that Eliza was his new friend. Very sweet!
Normally this has been our experience at school – the other kids are very kind. However, I did have one different encounter the first day of school. Eliza stayed awake amazingly well and her eyes were open very wide. As a result, sometimes her eyes will get stuck in a wide open position (usually looking up and off to the side). One little boy in her class looked over at her and said, “She’s creepy!” The mother bear in me jumped out and I stared that boy down and told him to be nice. I only mention this because now I laugh about how I reacted. I think I officially reached “mom status” with my scowl . Anyway, he is perfectly nice to Eliza now and we’ve moved on.
Today the PE teacher had set up multiple games that were similar to the games you see on Minute to Win It. Normally, I have to adapt some of the activities to make them work for Eliza but she really shined on one of the games. They were supposed to stack little plastic hockey pucks on their foreheads without letting them fall. As you can imagine, Eliza’s immobile body gave her an advantage for once. I was able to stack 6 pucks before they toppled over. She seemed excited when I told her that she was able to balance the most. Another fun day as a first grader!
August 22, 2011
First day of 1st grade!!! Eliza gets excited about school whenever we talk about it and last night was no exception. We kept telling her that she needed to go to bed earlier so she would be ready for school. Around 9:15 she was out, which is early for her. (Just a side note…any parents who are able to ge their children to bed before 9:00 pm need to teach me how. Our girls have never gone to bed before 9:00 on a consistent basis. The idea that some kids will sleep for 12 hours absolutely boggles my mind). She woke up ready to go and we even made it to school with time to spare.
Last year we opted for afternoon kindergarten because mornings can be tough with venting her tube, medicine, dressing and she usually has majority of her seizures in the morning. However, this year a lot of the fun things will be in the morning/early afternoon so we are trying to switch gears and get on an earlier schedule. We plan on going a few days a week for a few hours per day since an entire day would wipe her out. Her cousin isn’t in our class this year, which is too bad but we are looking forward to keeping in touch with her old friends at recess and making new friends too. Wish us luck!
Remy and Eliza – First day of 1st grade!
August 19, 2011
ELIZA’S 25th, 26th and 27th LIBRARIES!!! Today Eliza’s Library grew even more. Our sweet friend Jake chose to help Eliza’s Library for his Eagle Project and he has been very busy this summer. Today he placed a library in the Neurology Clinic at Primary Children’s Medical Center and added smaller bookcases full of books to the NICU and the Gastroenterology Clinic. He has plans to find homes for three more libraries to finish up his project.
Jake was motivated from the beginning and really took charge of his project. After Callahan was injured I sort of took a break from Eliza’s Library so Jake, his troop and family did it all. They assembled and painted 4 tables, 8 chairs, assembled multiple bookcases and organized a book drive. He maxed out an entire flatbed card at the hospital and there was even more not pictured. Great job Jake! We appreciate you help.
August 18, 2011
Our little Caroline will turn 2 next week and it is amazing how similar she is to Eliza. They look very similar, Caroline sounds just how Eliza did and they have similar interests. It hit me a couple months ago that Caroline was at the age where Eliza started to digress. She is already able to do so many things that Eliza could not – run, jump and walk down the stairs. It will be interesting, saddening and exciting (all at once) to watch her learn new things and essentially pass her sister up developmentally. When I was pregnant with Caroline I wondered if it would make me feel better or worse if she was similar to Eliza. From the minute she was born I knew that we had been sent Eliza’s twin…just 4 1/2 years later. I quickly realized that I love having girls that are so similar because I will always have a little reminder of Eliza with us. We might be able to see Eliza in Caroline from time to time and imagine what she would have been like without MLD. Eliza is fortunate to have such a caring and loving sister. Every morning she always walks over and talks to Eliza, says bye to her when she leaves the room and prays for her every night as well. Lately, I have seen her patting Eliza’s chest and saying, “It’s okay, Liza.” Whenever Eliza is having a seizure Caroline is right there to assure her that everything will be fine – “You okay, Liza? It’s okay.” 
Top photo: Eliza 2007 Bottom photo: Caroline
August 15, 2011
It is hard for me to believe that Eliza will be starting school in one week! I cannot believe the summer is already over – it’s like it never happened. Eliza’s kindergarten teacher is being moved up to 1st grade this year and we just found out that we will be in her class again. She was very understanding of our situation last year so it will be a very natural and easy transition into first grade. Since Eliza still takes a nap every day I think we are going to go for a half day a few times a week. We are looking forward to seeing her cute friends from last year and making some new friends as well. LIBRARY #24 – I never had a chance to post a very important Eagle project that was completed while Callahan was in the ICU. Connor did an AMAZING job! He is the most organized and efficient scout I have ever worked with. He took care of everything quickly and very responsibly. When he read about Callahan’s accident his family contacted me and came to visit. I was so glad that I had the opportunity to meet him since we weren’t able to be there the day he set up his library. His library can be found in the Outpatient Rehab waiting room in Primary Children’s Medical Center, which is where Eliza’s physiatrist practices. He is a very impressive young man and we are appreciative of all the time and effort he put into it. THANK YOU CONNOR! 7 more libraries are in the works and will be delivered soon! It is so fun to see it grow… 
It has been 2 months since Callahan’s surgery and life is getting a little bit more normal. He is doing really well, although he wouldn’t always agree. He is able to walk up and down the stairs easily, shower, dress and feed himself independently. He just got approval from our insurance company to go to Neuroworx, which is a physical therapy group that specializes in spinal injuries. He had his evaluation today and now he will be off to the races! August 4, 2011 Today is Eliza’s 6 year and 5 month birthday!!! It is hard to believe that she will be starting 1st grade in a couple weeks. She seems to get excited whenever we talk about it. We are looking forward to another great year and we are grateful for each day we have with her. She is such a blessing in our lives.
As for Callahan, he was released from the hospital last Friday and doing really well. He is able to get up and down our stairs, shower and dress himself independently. He is walking without any assistance and he even went for a little walk around the neighborhood yesterday. He is sleeping much better, which I am sure has made a big difference in the way he feels. He hasn’t gone back to work yet because his full-time job is rehab. We have been told that not as much progress is made once the patient is off the rehab floor so he has been trying to do a lot of exercises on his own along with outpatient therapy. We went to the pool the other day and he said that it helped his body loosen up. It also exhausted him. He came back home and fell asleep sitting up in a chair!
Callahan had a follow up appointment in Provo on Monday and then we went back to the Neuro Shock ICU and took some treats to the nurses and therapists that helped him while he was there. We were able to visit with some of them and they were amazed by his progress. Many of them commented that seeing patients doing well makes their job feel worthwhile. I think it was also interesting for Callahan to see the ICU from this perspective because he cannot remember everything that went on while he was there. We will never forget the wonderful care he received while he was in the ICU.
It is definitely nice to be under one roof again. I should have kept track of how many miles I put on our cars and how many gallons of gas I went through over the 48 days Callahan was in the hospital. Maybe I don’t want to know I got to know I-15 really well! The girls’ toys have been great for his fine motor skills – legos, play dough and Eliza’s kindergarten writing workbooks have come in handy! The girls love having their dad back at home too. Last Friday, my mom was talking with Eliza about Callahan coming home and she had several little smiles.
I was talking with a friend a couple weeks ago and commenting on how complicated life can get. When Eliza was a newborn I remember thinking, ‘What did I do with all of my time before I was a mom?’ After Eliza’s diagnosis I remember asking myself the same question. What did I do with all of my time before I had to worry about feeding tubes, medication, seizures, positioning her body and basically doing everything for her? As I helped Callahan with similar things in the hospital I thought back on the days of having only one disabled person to take care of and thinking, ‘that was easy.” I have learned to be grateful for where I am in life and enjoy it all – the easy times and the crazy busy times. We never know what might be coming next.
Thank goodness Heavenly Father knows our limitations. I am well aware that the outcome could have been very different and I honestly don’t know if I could have handled caring for two severely disabled people. That definitely would have been my breaking point. I don’t know how I would have been able to move/lift Callahan or how I would have been able to push Eliza’s stroller and a wheelchair at the same time…while chasing Caroline . In fact, one of my sweet friends told me that she had a nightmare about me. I joked with her and said, “My life is a nightmare!?!” She was at my house and Eliza was having a seizure, Callahan had just fallen on the floor and Caroline was bolting outside! When I asked her what I did my other friend chimed in and said that I should have been in the corner sucking my thumb!!!
It is intimidating to imagine what could have been. It has been very interesting to gain an appreciation for and empathize with those that live the rest of their lives as a complete quadriplegic. (I guess Eliza is now essentially a quadriplegic but a little body is easier to manage than an adult body). We have met some amazing people that have handled this very difficult situation very gracefully. They are great examples to me and I am grateful for the opportunity that we have had to experience it (to a verysmall degree). I truly admire them.
July 21, 2011
GOODBYE WHEELCHAIR!!! Callahan has been walking well with a walker or a gait belt since Sunday so they decided the wheelchair is no longer necessary. What a wonderful thing! It is so much easier to get around now. Yesterday, he was able to walk outside about twice as far as he ever has. His left leg does not cross over as much as it did in the beginning and he is able to go for longer stretches before he needs a break. Dizziness hasn’t been as much of an issue now that his blood pressure is normalizing so he graduated to knee high compression socks – as opposed to the full leg compression socks with ace wraps. He wore the shorter socks for about one week and today he was able to stop wearing the compression socks. It seems strange to see his legs…”chicken legs” as he calls them. Neck pain has been a huge problem ever since the accident and today his doctor wanted to try an occipital nerve block to see if that would help. He gave Callahan multiple injections in his neck, which was extremely painful. He said it helped alleviate some of the pain but I don’t know if he will try that again.
Today in therapy he climbed the bottom two steps of a ladder, walked a therapy dog around the floor, walked while bounce passing a ball and my personal favorite…putting a wooden toy together. The OT had him use his left hand a lot, which is much more difficult for him. I told him that his creation will proudly be displayed on a shelf in our house! It took him an hour to do it but he did the entire thing himself. Not only that, but we had to improvise because there were some missing pieces and he was even able to use an electric drill to widen a hole. He passed with flying colors and I told him that I would have a “honey do list” waiting for him when he got out of the hospital! It probably seems strange but any fine motor activity a child would like will be great therapy for him – play dough, legos or puzzles. Caroline is going to get an awesome playmate out of this. I shot several short video clips but my site is giving my fits right now. I will load those as soon as I can. THANKS FOR CHECKING UP ON CALLAHAN!
July 16, 2011
teamgive is the official volunteer charity of the Tour of Utah and we invite you to get up close and personal with more than 100 of the world’s best cyclists. Volunteer positions are still available for the August 9 – 14 professional cycling race. Whether you volunteer for one day or the entire week of the race, you’ll be sure to experience the heart of the race like no other. In addition, teamgive is requesting the help of over 100 volunteers to assist in the Tour of Utah’s Ultimate Challenge, August 6th.
For the second year in a row teamgive is proud to sponsor the teamgive Pedal Power Festival. As the official charity sponsor of the Tour of Utah we are excited to provide families with fun activities during select Stages throughout the Tour. Children are invited to bring their bikes and ride a safety course and learn the rules of the road. They will learn about street signs, bicycle hand signals and general bike safety. Professional BMX riders will do amazing tricks on a BMX ramp. Children will feel like pros as they compete in a relay specially designed for little ones. Kids will decorate their own banana racer and participate in the Tour of the Banana! (Bananas are then raced down a track. Picture a Pinewood Derby with bananas!) Kids can get their face painted or a temporary tattoo. The Utah Jazz Bear and Salt Lake Bees mascot, Bumble will be on hand to encourage the kids along and help hand out medals and take photos. The exciting family friendly event will take place during the following Tour of Utah stages:
Stage 1: Wednesday, August 10 @ 10:30 a.m. (Ogden)
Stage 3: Friday, August 12 @ 4:00 p.m. (Miller Motorsports Park)
Stage 4: Saturday, August 13 @ 11:30 a.m. (Downtown Salt Lake)
Contact David (david@teamgive.org) if you would like to volunteer. THANK YOU!!!
July 15, 2011
Eliza had a bit of a rough day yesterday with multiple seizures that were fairly large. They don’t last long and she comes out of them fine but they are a little strange for people to watch when they aren’t used to seeing them. I never want to make anybody uncomfortable or nervous so I brought her to the hospital with me today while Caroline stayed home with my mom. On our drive to the hospital, I told Eliza that we were going to go on a date with dad, which made her smile. It ended up being a fun thing because Eliza was able to be involved in Callahan’s therapy this morning. Instead of walking the halls of the rehab floor, we were able to go outside and he pushed Eliza’s stroller on a walk. Since Eliza is blind, I try to give her a heads up before we do something new. I told her dad was going to take her for a little walk and she did an audible sound, which is VERY rare. She did it again and again too. I kept teasing her that she sounded like a peacock! I really think she was trying to tell Callahan something and she had a little grin on her face. It was very sweet…for both of them. Callahan did really well and it was a good experience for him to walk on a different surface with slight variations in the sidewalk and different inclines. Here is a short video of the two of them.
VIDEO: CALLAHAN’S WALK WITH ELIZA
Apparently, the average length stay on the neuro rehab floor is 17 days and we have already exceeded that with our 25 days. They say spinal injuries usually require more time than other injuries that come through. Luckily, our insurance will allow Callahan to stay until July 30th. This is fantastic news because we wanted to keep him here as long as possible. Not because we don’t want him to come home but because we recognize that more progress is made within a facility than outpatient. We are hoping for more great changes in the upcoming weeks.
Our sweet friends gave Callahan a gift certificate for a massage and the massage therapist was even willing to come to the hospital. So, as I type this, Callahan is out cold and enjoying a much needed massage. He has earned it! Thanks again Debbie and David.
July 13, 2011
Here are some videos from therapy…
July 10, 2011
We have had quite the busy week so I have been slow on the updates. It seems strange to think that we are now officially one month into this whole ordeal. In some ways it seems like it happened just yesterday and in other ways it seems like it has been going on forever. I know Callahan has said that this has been a very long month. However, he continues to do really well and we are both so grateful for the progress we are seeing and we recognize that the outcome could, and probably should have been very different. What a blessing.
We have been taking advantage of the “passes” and checking him out quite often, especially for the holiday weekend. I know he enjoys getting out but it really wipes both of us out. The main floor of our house is pretty open and easy to navigate but we quickly see the advantages of being on the rehab floor where there are handrails everywhere, no stairs and nurses right around the corner. It is also interesting to fit Callahan’s wheelchair, Eliza’s stroller and all of their accessories into the car…not to mention see us walking around anywhere together. We look like a parade! We have run into a few little hiccups – like when his legs start collapsing on him and I am the only one there to catch him and support his weight It is amazing how heavy dead weight is! I am used to carrying Eliza around without any real problem but a full-grown man is another story. My back may never be the same again.
Despite all of our 4th of July dinners and BBQs, Callahan is still dropping weight quickly. I believe he has lost around 23 lbs and most of it appears to be muscle. There is a noticeable difference in his legs, arms and shoulders. His appetite still isn’t great and he doesn’t express any real excitement for any food in particular, however, when food is placed in front of him he eats pretty well. He is able to feed himself reasonably well with a fork or spoon and he is able to hold cups, which has been really nice. He passed his latest swallow study so they are not longer worried about him aspirating.
Callahan’s birthday was on the 7th and I wanted to do something special for him. I decided to throw a little surprise party for him a couple days before his birthday so he wouldn’t suspect anything. He said he was completely surprised and it was a fun evening for him.
His actual birthday was business as usual with PT and OT but his OT came up with a fun workout for him – he made his own birthday cake. She had him open all the packages, crack the eggs (yes, she had to fish out some shells), measure the ingredients, and mix it all by hand. He did really well but he was exhausted when he finished. The OTs even bought frosting and candles for us to decorate it. I wrote “Happy Birthday” and I had him write his name with the frosting. I thought he did well, especially considering it was one handed. It was sweet of them to think of him. That night we had a few friends come out to the hospital and eat some Cheesecake Factory takeout with us.
Callahan continues to work really hard in PT and OT. He has been working a lot more on his walking and was able to walk the entire rehab floor twice without assistance. He sometimes needs to stop and regain his balance or rest but he is doing amazingly well. He has been practicing stairs and can go up fairly well but going down in much more difficult. He has been working on regaining his balance and I have been able to do little exercises with him where we bat a balloon or bounce a ball back and forth while he is standing – forces him to shift his weight. We were joking today that he sometimes does best when he is doing two things at once (walking and passing a ball) but anybody that knows Callahan can attest that he enjoys doing multiple things at the same time. We were also laughing about the fact that he can walk better backwards than forward because his left foot doesn’t catch. So, if you see him traveling backwards you will understand! He is also learning how to dress himself again. The OTs have a lot of little tricks and strategies but it is still really difficult for him. It probably takes close to 30 minutes for him to get a shirt, shorts and shoes on and he is ready to fall asleep by the time he is done.
Callahan is always asking me to express his gratitude to everyone and he always gets emotional when he talks about all of the support and prayers he is receiving. He said the prayers are so tangible to him – like nothing he has ever felt. It really is an amazing experience to see how family and friends have rallied around us and helped in so many ways. I thought we were indebted before with all of the help we receive with Eliza and now we are even more in the hole! We cannot thank everyone enough for the calls, emails, visits, babysitting, treats and especially the prayers. It is overwhelmingly wonderful to feel such love. We couldn’t ask for better support. THANK YOU!
July 1, 2011
Another great day in therapy! Callahan has been working extremely hard and working on strengthening his left side and reeducating his muscles. He walked around the entire floor with a walker again, brushed his teeth by himself and even fed himself some Sour Patch Kids!
I took a few short videos of him working with his occupational therapist. The first video was a treatment called Bioness, which is essentially a shock therapy that jump starts the muscles. Today they used it on his left (the weaker) hand. I thought it was fascinating.
PUSHING AGAINST RESISTANCE VIDEO
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I have neglected posting any updates on Eliza with all of this craziness! A few days ago, Eliza had a tendon release surgery (Achilles) to help with her drop foot. We knew this was most likely in her future since her diagnosis but we figured that we would rather do a surgery than force her feet into AFOs. It was a painful thing for her but she was fine after about 5 minutes. Now her feet are wrapped up and she looks like she belongs on the rehab floor too Sweet girl.
The other night, I heard her breathing differently around 4:30 am so I went in to check on her. She looked a little pale so I decided to check her oxygen. It was all over the place so I texted our friend to see if he could come over to check on her when he woke up. Being the fantastic person that he is, he came over on his way to the operating room and listened to her. We decided that she was doing okay but that I would start bringing her along with me to the hospital so I could keep a close eye on her. She has been extremely tired but her oxygen levels are a little better now. So, Eliza has been coming with me to cheer her dad on in therapy…and take some naps with him too!
June 30, 2011
Anyone that knows about teamgive understands why it is so important to our family. It is ironic that Callahan has spent the past few years raising awareness for neurological issues and now he is a case study himself! Summer is the busiest time of year for teamgive since they are heavily involved in cycling and other athletic events. This year is certainly no exception. Last year, teamgive was in charge of what we now call the Pedal Power Festival. It is a kid’s event that is held in conjunction with the Tour of Utah (6 day cycling event). The Pedal Power Festival was a huge success and we were working to make this year even better.
Tour of Utah is going to be held August 9-14 in various cities throughout the state. It is a wonderful event that has recently achieved UCI 2.1 stage-race ranking by the world’s governing body for cycling (UCI), as one of top multi-day road races in North America. This is a big deal for the state of Utah and for teamgive. It truly is amazing to watch…even for people like me that are not cyclists.
teamgive has been asked to supply a lot of volunteers, not only for the Pedal Power Festival but also for the week long events. This event is very important to Callahan and he would love to see teamgive live up to its responsibilities for the race.. If you are interested in volunteering your time please follow the link below. Thank you!!!
June 29, 2011
Callahan was really sore again yesterday and he completely crashed after therapy. He basically slept for 5 hours – waking up from time to time just to say something sort of funny. He was so tired and delirious that he kept telling me that he had been given the wrong medication. Before I could respond he was already asleep again and snoring away. He even slept through a dinner date with some of our friends. Thanks again, Quinn and Kristi, for putting up with his snoring!
Today was another great day. His pain was down and he was able to accomplish a lot in therapy. He walked again in the hallway with a walker and then for a shorter distance just with hand support on his arms. He is still having trouble with his left foot when he walks. The PT wraps his leg with his toe up so it doesn’t drag as badly. He usually starts the walk off great but his foot/toe begin to drag more and more as he goes along. His left foot often kicks the back of his right heel as he gets more tired. Callahan has been drinking thick liquids along with his food ever since they discovered he was silently aspirating. Today, he passed his swallow study so he is now allowed to drink thin liquids again, which he is VERY excited about. His blood pressure is still a little out of whack but they did cut the dose in half today to see how he does. As a result, he does get a little dizzy if he is standing or sitting straight up for too long. They also use compression sock and wrap his legs (you will notice in the video below) to help the blood circulate better.
After Callahan was done with PT he said he wanted to come home with me to see the girls. He was excited to be in his own home and have a change of scenery. He wasn’t in as much pain today, which made the car transfers easy. When we pulled into our driveway, my sister had already put together a welcome home poster for him, which brought tears to his eyes.
I have been taking a lot of photos and video of his journey and here are just a few to show how far he has come! Just don’t mind my commentary
VIDEO: ICU moving leg
VIDEO: ICU – standing
VIDEO: Nustep machine
VIDEO: Swallow Study 3
VIDEO: Walking with walker (This video was taken at the beginning of his walk so it looks really easy for him, which it is not. He form isn’t as good the longer he walks…but it is coming!)
June 27, 2011
SUNDAY: We weren’t able to bring Callahan home on Sunday after all. The order hadn’t been written out by the doctor yet so we just sat tight and spent the day in the hospital. I did take Callahan outside in his wheelchair and we walked around the hospital. He also took a good nap and he had some fun visitors that brightened the day. The weekends are pretty quiet around the floor and I hope to bring him home this Sunday for a little change of scenery.
Callahan was also able to touch his thumb and pointer finger together on his left hand — PROGRESS ON HIS LEFT HAND! We are still taking each day at a time but we are cautiously optimistic about his future mobility.
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Callahan was really sore and uncomfortable from the moment he woke up this morning, which made the first half of therapy difficult. For PT, Callahan practiced walking up stairs for the first time. He moved up about 6 stairs fairly easily but when he got to the top, his legs started to shake and collapse. His lower back was in so much pain that it was difficult for him to do much after that. The PT let him rest for the remainder of his time and said they would hit the afternoon session harder.
Instead of breathing through his chest and ribs, Callahan now breathes with his stomach (much like Eliza). The OT had him concentrate on various breathing techniques and then finished her session with moist heat, which he loved! She told him to stay put for at least 15 minutes but I think he was laying there for about 45. It did seem to relax him and help dull the pain a little.
In the afternoon, the PT had him practice walking with a walker again. This time he was able to walk the length of the hallway two times (400 ft)! The last 20 feet or so were without the walker – just supported on each side by a therapist. He was also able to use a machine that makes a motion that is similar to pedaling a bike and forced him to use each leg equally.
Tonight the massage therapist worked on his neck and shoulder muscles to help lessen the pain. Then our nurse, Jonathan came to the rescue with some Valium and Ambien. He should sleep well
June 26, 2011
Yesterday was another great day for Callahan! He walked the length of the entire hallway with a walker, was able to stand up from a sitting position with little assistance and I got to take him to lunch outside of the hospital! I had to pass the “transfer test” to prove I was able to get him in and out of the car by myself, which was surprisingly easy. The physical therapist and recreational therapist were always there to help in case I needed it but everything went well. Now I will be able to take him out on “pass,” which I am hoping to do for a while today. I thought he might enjoy coming home for a couple hours to see the girls.
We also had a fun date night in the hospital with some friends. The dining room has a projection screen and we were all set up to watch a movie last night. However, we were having so much fun just talking that the movie never happened – maybe next week.
June 24, 2011
Callahan has been doing really well with his physical therapy. He has been doing more walking in the parallel bars and yesterday he was able to walk three times as far. He has been spending most of the day in a wheelchair and he is working on sitting up independently. The physical therapist will sit him up on the bench and lightly push him from different directions to see if he can maintain his balance while strengthening his core muscles. His blood pressure is still low without medication (common for Central Cord injuries) so he gets a little light headed and dizzy if he sits up too long.
The nurses told us about a former patient that had crashed on a mountain bike and sustained similar injuries to Callahan. They kept referring to his as “superman” and “amazing.” To our surprise, he came to visit us yesterday. Christian’s accident was only 10 months ago and he is doing incredibly well. He can walk, bike, fish and do pretty much everything he did before the accident. He said his neck and fingers are stiff and he cannot run yet but it was inspiring to meet someone that has overcome his injuries so well. He said that it took him 6 weeks to get to where Callahan is now, which I think gave Callahan some hope. He had some great advice for Callahan and I am sure we will stay in touch and learn more from him. Christian, thank you for taking the time visit.
The girls and I stopped by to visit Callahan today and we were able to have lunch with him. Caroline sat up in his lap for the first time and enjoyed snuggling up and playing peek-a-boo with her dad. She is a little crazy when I take her so it might just be a bi-weekly thing Facetime will have to be good enough on the other days. I cannot take care of Callahan and Eliza while chasing Caroline down the hall. We are quite the circus around here!
June 22, 2011
Another great day for Callahan. He was able to do some more walking in physical therapy but he said he was too tired to walk as far. He is now able to slightly bend his left leg, which is HUGE considering his left side has always been much weaker than the right. He is also moving the fingers on his right hand slightly.
Callahan sometimes has difficulty swallowing thin liquids like water so the speech therapist ordered a barium swallow test. They did find that he is swallowing into his airway, which could potentially cause problems like pneumonia. For now, they have him drinking liquids that have been thickened – YUCK! He isn’t a fan so hopefully it doesn’t last too long.
Some of our sweet friends brought in stuff for a root beer float party today. We had a fun time visiting and eating treats in the dining room. This is the incredible view I mentioned before. We live in a beautiful city!
June 21, 2011
Callahan did about an hour of physical therapy per day while he was in the ICU but today was his first full day of therapy. He was finally able to wear some real clothes and they PT helped him get into his very first wheelchair to go to the gym. He started at 9:00 am and went for about 1.5 hours, took a lunch break and had another 1.5 hours. He met with the physical therapist twice, occupational therapist twice, speech therapist (swallow) and had a massage therapist evaluation. By 2:30 he was beat and he took a good nap. The highlight of the day was…he walked with the help of the physical therapists and some parallel bars!
Again, not the greatest photo because it was with my phone. Had I known he was going to do something so amazing I would have brought my nicer camera!
He is also swallowing better as well. He was able to eat a sandwich and grapes for lunch (cut real small) and he finally got the Cafe Rio tacos he has been dreaming about for the past 10 days (thank you Loren)! He will mostly likely have the same busy schedule for the next little while, which may help with his sleeping!
June 20, 2011
MOVING DAY. Callahan was transported by ambulance up to Intermountain Medical Center in Murray today so he can start on his rehab and be a little closer to home. (I must admit, it was nice to have a shorter drive home tonight). I wondered if the ambulance ride would bother him since the freeway is so torn up in between the two hospitals but he said it was just fine. I followed in my car and hauled all his stuff up to his new room. The neuro rehab unit takes up the entire 12th floor of the hospital and the views are amazing – I will definitely have to post some photos. For those of you that know Gates Hunsaker, he is our new next door neighbor in the hospital. It will be fun to get to know him and his family better during our stay.
Today we just took it easy in Callahan’s room and met the staff that will be working with him. They are going to be wonderful. It is a more relaxed than the ICU, which means our girls can visit him anytime we want! They encourage family and friend involvement and try to make it as comfortable and home-like as possible. Down the road, they will also allow me to check him out (“just like a library book” as Callahan said) for a couple hours here and there to go to dinner or whatever. It is difficult to say but the doctor thinks he will be in the hospital for another 4-8 weeks with regular outpatient therapy thereafter.
As I was cleaning up this morning, I came across the bag with Callahan’s cycling clothes from the accident. They were cut from his body but they saved them for me – I told him that I am going to frame them . Don’t you think that would look nice in his office next to his signed NBA jerseys?!? I am always amazed how little cyclists wear when they are out on the road and thankfully, he had more clothing on because he was at a higher elevation and it was night time. Callahan had stopped just 3 minutes before his crash and put a long sleeved jersey/jacket on, which probably prevented his body from getting scratched. As I was laying the jersey out on the floor to take a photo, I got a little teary eyed when I remembered whose name was printed across the back of the neck - Eliza. How appropriate. I already feel as though there were angels (both heavenly and earthly) looking out for him that night and maybe our sweet was Eliza was petitioning as well.
June 19, 2011
HAPPY FATHER’S DAY! What a wonderful day to take time to celebrate the men in our lives that we love. I had a great time visiting with Callahan, my dad, my father-in-law and Callahan’s grandfather…even though we had to move our celebration to the hospital. I tried to make it a special day for Callahan but the highlight was definitely bringing the girls to see him again. Thank you to our sweet nurse, Jill, that wheeled his bed out into the hallway so Callahan could spend some time with the girls.
Caroline didn’t sit still long enough to get a great photo of the two of them
Good to see him smiling!
Caroline enjoys pushing Eliza’s stroller and she kept trying to push Callahan’s bed down the hallway
Callahan has been looking much better the past couple days. His coloring is coming back and his spirits seem better. Swallowing has been a little difficult for him but that seemed to improve dramatically at lunch yesterday. I had been told that they were considering a NJ feeding tube (down his nose) unless he started eating. Just seconds after I told him this he said, “Feed me that soup.” I guess that was all the motivation he needed. He kept saying, “I am not getting a tube. I am not getting a tube.”
The physical therapist decided to give me a gift today as well. Normally, two PTs come into the room together twice per day but this afternoon four came in. They started to change his bed in the chair position and one turned to me and said, “Do you have your camera?” They proceeded to help Callahan stand up!!! Two were supporting his legs and two were supporting his upper body. It was an exciting thing to see. He has also been able to kick his left leg, move a hand and move a finger slightly. I have video of him doing some of these things and I will try to add that soon.
My sister and brother-in-law made Callahan this darling photo board for Callahan’s room. It has one of my favorite courage quotes by Euripides on it – “This is courage in a man, to bear unflinchingly what heaven sends.” This has been one of my favorite quotes over the past 4 years and it runs through my head often, especially when I put on my little red courage bracelet for Eliza. We truly don’t know what our Heavenly Father is going to ask of us in this life. I certainly haven’t expected some of the challenges that have come my way and some of them have definitely made me flinch a little but I know that He allows things to happen in our lives so we can prove what we are made of and show how we will react. I know this is just one of those times.
Callahan’s new hardware
Sitting up for the first time in bed
June 18, 2011 Callahan had a much better day yesterday. He finally slept a little better and he seemed much more comfortable. The nurse took the front of his neck brace off (just for a break) and put ice on his neck/chest for most of the day, which I think felt very good to him. My good friends, Kim and Clara were there with me and we just talked back and forth and visited with him. Many times his eyes would close and we thought he was asleep so we tried to be quiet but he would open his eyes back up and tell us that he enjoyed listening to us talk. You never have to tell girls to keep talking! We had a nice visit with him and we were able to make him laugh and smile a bit. He has been having short physical therapy sessions each day and yesterday they sat his bed up so his back was completely straight and his feet were flat on the floor. I don’t think it was extremely comfortable but it was quite the site to see. I have a picture that I will post later. We cheered like we were seeing a child sit up for the first time! I am thinking that this is how the rehabilitation process will be. It will be so exciting to see him make some progress and relearn so much. We may be able to move him up to IMC as early as Monday but we are still waiting to hear for sure. It will be nice to have him closer to home because right now I am driving one hour each way to get to the hospital. We have heard nothing but great things about the rehab facilities at IMC and it will be his home for awhile. We are hoping for great things!!! I am going to see if I can arrange to bring the girls down again tomorrow to see him. I know Father’s Day will be a sad day for him and seeing his girls would be the best gift I can give him. I know I say this all the time but thank you, thank you for everything that has been done to help our family. We have been amazed by the outpouring of love and support from family, friends and people we don’t even know. I came home last night to two neighbors working on my yard. They had cut the grass, worked in my flower beds and fixed my sprinklers. My yard will probably look better than ever! Our sweet ward family has decided that they want to bring in meals to Caroline and Eliza (since I am not here a lot to eat) so I have a fridge and cupboards packed with snacks and Pediasure . My family and some friends have been amazing with my girls. My sister came up with all sorts of charts that track when and how much Eliza has eaten, how she tolerated it and when Caroline took naps. It is nice to catch up each night on how the day has gone and I know they are having a fun time going for walks, to the park and being able to relax at home and stay on a schedule. Callahan’s parents have spent a lot of time by his side helping care for him as well. We could not be doing all this without all of you, so THANK YOU! June 16, 2011 We had been warned that the day of surgery and the day after are notorious for being the most painful and uncomfortable days, which definitely proved to be true. Callahan was in quite a bit of pain for the entire day despite all of the medication he was on. I stayed the night with him in the ICU and it was a very long and painful one for him. After surgery, they moved him onto a different bed that has the ability to move different directions and apply varying pressures to keep the body from developing pressure sores. Callahan was not a fan. When it moved it also caused his shoulders or neck to slip and become incredibly uncomfortable. They allowed me to turn the bed off for awhile in hope that he would fall asleep…didn’t work. They also wanted him to try using a BiPap machine that helps widen the airway and reduce the chance of pneumonia. It has a mask that fits over his nose and mouth and makes quite a bit of noise, which we quickly learned presented a bit of a problem. Since Callahan’s throat is so sore he cannot speak very loudly and when he is tired his speech becomes very slurred. He wasn’t able to fall asleep with the mask on and each time he wanted to tell me something I had to take the mask off, which caused loud alarms. We chose a signal (moving his right arm) for him to use when and if he wanted me to take the mask off. We went back and forth for awhile and it was apparent that he was not going to sleep with that stuck to his face. The respiratory therapist was kind and let him take it off for the night. The third and new problem is he is unable to clear his throat or swallow very easily. In an attempt to clear out some congestion, the nurse suctioned his throat. He continued to need this throughout the night here and there but I was able to take care of it. Between 10:00 pm and 12:30 pm, he was literally asking me to reposition some part of his body every 5 minutes. I tried to help him, the nurse tried to help him but he was just uncomfortable and he only slept a couple hours. We came to the conclusion that the next few days are just going to be rough and he just has to get them behind him.
My phone camera stinks but you get the idea…not comfy
How do I thank someone who most definitely saved Callahan’s spine if not his life. A couple days ago, I had the honor of meeting Danielle Mitchell who is the Sports Medicine doctor that helped Callahan that night. She was apart of Team Lucky Girl and they came upon the scene just in time to help. She is an incredibly kind and sharp individual and we so appreciate everything she did help Callahan. She also told me another interesting part of the story. She was just hired as the head of the Sports Medicine department at the University of Tennessee and she has been going through the equipment that she has accumulated over the years as she packed a medical bag for the race. She held a neck brace in her hand and thought – this is way to big and bulky. I should get rid of it. However, she said something told her that she needed to hang onto it for some reason. Now we all know why. Danielle was a very humble person as we talked about that night but she was the individual that yelled at Life Flight when they were giving her a hard time about coming, the person that told the EMT’s to buzz off as she started IVs, the person that called me at 2:00 am to give me the news but most importantly the person who stayed by his side (along with other wonderful teammates and people) for two hours as he lay in the road. Her team continued on and she was able to later join them and finish the race. She said she will definitely be flying back to Utah to participate again next year. Danielle, I truly cannot thank you enough for everything you did to help Callahan. I appreciate it more than words can say and it was an honor to meet you.
June 15, 2011 The surgery went great! The doctor came into the waiting room after two hours and said, “That was easy.” We had been told that it was a pretty cut and dry procedure but it is always nice to hear that it went as well as he expected. During these procedures the surgeon starts by going in through the front of the neck and removing the broken vertebrae and securing it with a strut graph. A cadaver bone is put in place and then the entire area is packed with crushed bone (from Callahan), which helps it fuse. If the surgeon isn’t able to repair and secure it all from the front, they have to also go in through the back of the neck and secure it with cables. From what I had learned from the doctors and nurses, I was sort of planning on both but they were able to fix it through the front. The surgeon said he was debating but he wants to see how Callahan does and what he is able to do. The surgeon said he thinks Callahan will be able to walk again (with a lot of physical therapy) but he doesn’t know about his hands. We hope movement will return with time and as the hematoma shrinks. Naturally, losing movement in his hands is a really scary thought for us so we will hope and pray for the best. Callahan was extremely confused after the surgery. He kept asking me where he was, what happened, why his neck hurt and that the walls in ICU room (where we have been the whole time) were now a different color The plan for now is to let him recover for several days and then move up to IMC for rehabilitation so we will be closer to home. I think he will be there for a few weeks and then on an outpatient basis. The staff down here at Utah Valley Regional have been amazing. I have to admit that initially, we both wondered if we wanted to be up in Salt Lake at the bigger hospital but have been so happy with the care and attention he has received. Not only that, but Dr. Reichman is considered to be the best neurosurgeon in the state and he practices out of this hospital. I was going to say coincidentally he works out of this hospital but I don’t believe in coincidences, especially with everything that has happened. Thanks again for the love and support!
June 13, 2001 (night)
When I walked into Callahan’s room this morning I had to laugh a little because his bed had been turned around and pushed toward the window – as if he were working on his suntan! It had been moved because the doctors had been in and turned his bed to show Callahan his MRI and scans on the computer screen. He was in and out of sleep when the doctor was explaining things to me but I thought he had caught most of it. However, yesterday he said to the doctor, “I am sure I have already asked you this but what exactly happened to me?” The kind doctor then went over everything we had been told the day before. His memory is fine, the medication just makes him care a little less about everything…including breathing deeply. We have to remind him from time to time. His day was about the same as yesterday. His movement appears to be about the same but it does seem as though less effort is required to raise his arms. He received physical therapy, respiratory therapy, enjoyed talking with some visitors and took some short naps in between. He was excited because he was given permission to eat milkshakes and smoothies. He keeps talking about how hungry he is (he hasn’t eaten any real food since Friday) but he doesn’t seem to eat much when it is available. He is still trying to talk the nurses into letting him eat things that haven’t been approved yet. Always the negotiator! While he was a little drowsy today he kept talking about tacos. I assured him that I will happily get him some tacos once I have the green light from the doctor. Anybody that knows Callahan can attest that he loves technology and is using it constantly – phones, iPads, laptops and on. He is always using or talking on something! His patience was tried today as I served as his hands. He wanted me to hold his phone over his eyes, which basically look up toward the ceiling, and he would tell me what emails to open, erase etc. Let’s just say that I wasn’t quite up to his speed and I am sure he won’t be asking me to help anytime soon. We did learn a little more about what we can expect during and after surgery. He will spend a couple days in recovery following the surgery and then around 6 weeks in rehabilitation (beginning in the hospital and then eventually on an outpatient basis). Assuming he regains much of his movement back, I imagine that he will basically have to relearn how to do everything – walking, eating, holding objects etc. It is going to be tough. I was also told that he will have to wear some sort of brace on his neck for 6 months or so. I was certain that I had misunderstood and kept asking, “6 months?!?” I was surprised it would be that long. I did fail to mention the highlight of Callahan’s day yesterday. His sweet nurse agreed to let us bring the girls to see him! Since they are not old enough to go into the ICU, she wheeled his bed into a hallway area where he was able to see them. Initially, Caroline sort of stared at Callahan. I am sure his neck brace looked a little strange to her. However, she quickly told him, “I la lou, Daddy.” I think it melted his heart. He couldn’t ask for better medicine than his little girls. Eliza was having a more difficult time and I am still not quite sure why. When she woke up in the morning I was telling her how he had been hurt and that he was in the hospital but that she would be able to visit him. While driving there she started to cry and wimper when we were about 2 minutes away. Eliza hardly ever cries so when she does I know that something is really bugging her. Her body was starting to slip a little in her car seat so I pulled over to adjust her – that usually does the trick. However, she was still a little upset. Once we were at the hospital I was able to hold her and that seemed to help a little but she continued to wimper the entire time she was there. The fear started to set in as I thought – not now, Eliza. You cannot get sick this week. My mom and mother-in-law took the girls back to our house and Eliza apparently let out a big sigh as she was put on the couch. Our little homebody was back home and great for the rest of the day. Our sweet nurse, Jill, did a real service by letting them see Callahan and we certainly don’t expect that to happen regularly. So for now, we taped photos of the girls on his ceiling so he can look at those instead of the boring ceiling tiles! I have had a lot of people tell me that they cannot believe this was happening to us when we already have so much on our plate with Eliza. The thought that keeps running through my head is NOBODY IS EXEMPT. Nobody is exempt from trials and challenges. Everybody has them and everybody has to find ways to overcome them. Of course the timing is never ours either. If I have learned one thing in the past four years it is whether we have a smile or a frown on our face our situation is still the same. Sometimes my attitude is the onlything I have control over. I am a strong believer that we are given challenges to refine us and help us become more charitable and compassionate people. There are always things to be learned. Callahan has mentioned time and time again that he now knows what Eliza goes through each day. She knows what it is like to be trapped in a body that does not do what her brain would like it to do. She knows the frustrations of not being able to itch her nose when she wants to or manipulate objects in her hands. My father-in-law and I were just discussing tonight how maybe this is a very big part of what we are supposed to learn. Callahan has been out raising awareness for neurological diseases for teamgive and now he can empathize with these individuals on a whole new level. Reality continues to sink in and I am understanding more and more what a difficult road this is going to be for us but I hope that we can look back later and see that we grew and hopefully became better people because of it. Thank you once again for the phone calls, emails, texts and especially your prayers! They are most definitely felt and appreciated. -Nikki
June 13, 2001
HOW IS MY DAD DOING. I think our next few updates on Eliza’s site will talk a lot about how Callahan (Eliza’s dad) is doing. This past weekend he was participating in the Rockwell Relay Race, which is a 500 mile race that runs from Moab to St. George, Utah. It is a challenging race to say the least. Not only because of the distance and elevation changes but because the cyclists ride continuously through the night as well as the day. It was around midnight and Callahan was on his second leg of the race. He had just reached the summit of Boulder Mountain (elevation over 9,600 ft) and was coming upon a cattle guard in the road. He said he had already crossed about a dozen of them in the race and he thought he saw what was a “sweet spot” to cross it. Picture a cattle guard in your head – the metal pieces run horizontally but this one also had a metal seam/slat that ran vertically. He thought it looked like a solid piece that his tire would be just narrow enough to ride across. It ended up having a slit in it that was just the right (or wrong) width for his tire to fall in to and get stuck. His tire stopped and he was immediately flipped over his handlebars. The force was so strong that the cleats that clamp his shoes into the bike pedals were ripped from the bottom of his shoes and are still in his bike. He remained conscious through the entire thing and can remember flipping and falling partially on his back and right side – hitting the back of his head. He knew immediately that he could not move. The wind was naturally knocked out of him and he was having a very difficult time breathing. Fortunately, another cyclist was right behind him and witnessed the entire thing. He stopped to help Callahan and the rest of his teamgive relay team were just moments behind in the support car. They immediately gave him a Priesthood blessing and within minutes a sports medicine doctor came upon the scene and was able to stabilize his neck in a brace and help him – another tender mercy. The high elevation and remote location presented a bit of a problem with phone coverage. Another miracle was that a support member had been given a satellite phone earlier in the night (commenting that he didn’t know why it had been handed to him) and he was close behind as well. Life flight was called and he was flown to Utah Valley Regional Medical Center in Provo. I was called at 2:00 am, which made my heart drop. The doctor on the phone was reassuring and said she suspected a spinal injury but that he was doing ok and he was conscious. Thankfully, I have family that live minutes away from me and my brother was able to come over and stay with my girls who were sleeping soundly. I was able to remain calm as I made the 45 minute drive to the hospital. I have to admit that as I pulled into the ER parking lot, my mind began to think – “What sort of shape is his body going to be in?” “Will he be bleeding and cut up?” I was met by a couple doctors that told me that more tests needed to be run but they were now calling it a partial spinal cord injury and that I could go in to see him. I was pleasantly surprised to see that the only cuts were a few tiny cuts on his knuckles and knees. However, he was in tremendous pain because his legs were cramping up from all the riding he had just completed. He still couldn’t move his body and he told me how to move his legs to help him stretch. Later that morning he was moved up to the Neuro Shock ICU where he began to feel more comfortable. The MRI and scans confirmed what an earlier X-Ray had shown. He essentially crushed the C4 vertebrae in his neck and had pushed it 4.5 mm back into his spinal column – causing a hematoma (bruising) and swelling that is cutting of the spinal fluid. Surgery is definitely in the future but we are waiting for the swelling to go down more before they go in and manipulate the area. Right now his movement is very limited but promising. He can slightly bend his right leg and move his arms up and down with a lot of effort. He still cannot move his hands, fingers, toes or his left leg but the neurosurgeon believes some of that may come as the swelling goes down. He is of course, confined to a bed with a neck brace (which is driving him crazy), on oxygen and on strong medication that makes him pretty drowsy. It is definitely a frustrating, uncomfortable and scary situation for him to be in but I think we both feel at peace and know that it is going to be okay, no matter the outcome. I would truly like to thank everyone from the bottom of my heart for all of their thoughts, prayers and help. I appreciate the calls, emails and texts and I apologize that I am not always able to respond to them all. I have been saving them on our phones and computers and they will all be passed along to Callahan. As you know, our situation with Eliza is somewhat complicated and I appreciate my family and friends who have been willing to step in and take crash courses on how to care for/feed her so I can spend as much time with Callahan as possible. It will most likely be a couple weeks before there is any talk of him coming home and we appreciate all the help. I will try to update Eliza’s site and Facebook as we know more. June 7, 2011 I had fallen a bit behind on Eliza’s Library so today I spent 8 hours and got all caught up! I have never sanitized, sorted and “stickered” so many books in one sitting. We are working on a few exciting things that I hope come together in the next month or so. As of today, Eliza’s Library has collected/donated
22,348 books!
June 6, 2011
Every graduate deserves a party so on Saturday we combined Eliza’s 6 year and 3 month birthday with a graduation party. I wanted to celebrate Eliza but also thank our friends and family that helped make school possible. My mom, mother-in-law, sister and several friends – Kim, Kyra, Angela- helped me with Caroline for the entire school year, which I appreciated so much. I know that they all had other things they could have been doing with that time but I appreciate the help. It was fun for me to have that one-on-one time with Eliza and I know that Caroline had fun getting away from us too!
THANK YOU, THANK YOU ONCE AGAIN!
Many of my “Caroline helpers” had graduates too so we wanted to recognize and celebrate their accomplishment as well
_________________________________________________________________________________________________________
Gifts from a sweet little sister…
Caroline absolutely adores her big sister. Recently, she has been working on sharing with her friends and this has transferred over to sharing with Eliza. She loves to put cereal in Eliza’s hand or close to her mouth. Today (while Eliza was sleeping) Caroline placed her little princess figures inches from Eliza’s face and gently put her favorite necklace around Eliza. Once Eliza woke up, Caroline wanted to share her graham cracker with her. Every morning without fail, she greets Eliza very excitedly, “Hi, Liza Lou” or “I love you.” She also runs to Eliza when the music is on and helps Eliza move her arms and dance. Sisters are the best! I know Eliza would agree.
June 3, 2011
KINDERGARTEN GRADUATE!!!
Yesterday was Eliza’s Kindergarten Graduation, which was very exciting. She took a great nap in the morning before school so I was certain she would stay awake at school. However, she ended up snoozing again in her stroller. We caught it all on tape so she can listen to it. It was a very fun day and definitely an exciting milestone for Eliza and our family. We never dreamed she would have the opportunity to go to school so this experience meant a lot to Eliza and to us.
The proud gradates. Eliza is on the far side
Eliza with some of her friends
Eliza and her Dad
Eliza, Remy (her cousin) and Grandma
Graduation was followed by yearbook signing. This was my favorite note from one of her sweet friends, Annie
June 1, 2011
Eliza had some cute visitors today! The Activity Day girls from the S.M. 8th Ward did a book drive for Eliza’s Library and delivered them this afternoon. They collected 315 books! These girls were so sweet and were excited to meet and talk with Eliza. They asked some great questions and were interested in learning more about Eliza and MLD. We truly appreciate their thoughtfulness and the time that went into this project. We know many children will benefit from the books. Thanks again Erica and girls!
They even read her a story while they were here!
May 25, 2011
The end of the year kindergarten assessments were last week and Eliza had most of the week off from school. My sister and I packed up my car with our kids on Monday and headed down to St. George for the week. We had a great time. We were able to spend a lot of time outside at the park, on walks, swimming and just relaxing. Eliza took some really long naps so she must have needed the rest. My girls loved spending time with their cousins and it was so fun to see how excited they would get every morning when they saw each other. The school year is wrapping up and the remaining days are all filled with fun – a field trip to the zoo, field day, kindergarten picnic and of course, GRADUATION! The kids have been practicing the songs a lot during class and I have seen many smiles on Eliza’s face as she listens to her friends sing. She is very excited to be a 1st grader next year. Heavens, I am excited to be a 1st grader again next year
May 15, 2011
Eliza had an okay week. Each morning I awoke to her loud breathing, which usually means she is seizing. Sure enough, we started off every morning with some seizures that were a little bigger than normal. She came out of them just fine but they did seem to happen one after another for 30 minutes or so. After she worked them out the rest of the day seemed to go well. The weather has been beautiful so we were able to get out on some walks and trips to the park. We are looking forward to spending some time with cousins this week!
May 8, 2011
HAPPY MOTHER’S DAY!
Having the opportunity to be a mother is one of the greatest blessings I have in my life. Not a day goes by that I am not grateful for my sweet daughters. I have learned so much about myself in the past six years and I am grateful for all the lessons I have been taught – both those that came easily and those that brought me to my knees. Many still bring me to my knees. I am grateful that I have had the opportunity to experience two different kinds of mothering. As one of my friends commented not too long ago, “You have one child that can’t move and one that never stops moving.” It is the truth. My life has the two extremes, which can be both fun, rewarding and exhausting. It is definitely a unique experience but one that I woud never change.
Every Mother’s Day I am always grateful for all of the Mother’s in my life. My mom, mother-in-law and the “2nd moms” that treat me and my daughters like their own. I have so many wonderful women in my life that do everything they can to help make my life a little easier. They have done little acts of service and kindness that I never would have thought of but have been so helpful to me. Their examples have taught me so much and I only hope that I can help others the way they have helped me.
May 3, 2011 I have many wonderful stories and experiences that have happened with Eliza that I will never forget and this year’s Reflections contest was definitely one of those. For those of you that aren’t familiar with the Reflections contest it is a creative arts contest that takes place in the public schools. It includes several categories: photography, visual arts, dance, music etc. The judging begins at the school level then moves on to region and state levels. This year the theme was “Together We Can.” Imagine my surprise when I learned that one of Eliza’s classmates chose to draw a picture of Eliza for the contest. Hallie has always been incredibly sweet to Eliza. From the beginning of the school year, she has been extremely kind and accepting. One day she even asked her mom if she could have a play date with Eliza. Her mom, who was aware of Eliza’s limitations, asked her what they would do at a play date. Without a hesitation, Hallie looked at her mom and said, “Read books and stuff.” And we did! It was a great play date. Anyway, back to the story…Hallie drew an entry entitled “Helping Eliza.”
She drew a picture of me pushing Eliza’s stroller with two children (one of them being Hallie) on the sides. This was too cute because this is often how we looked going down the hallway.
Eliza has her own little entourage!
I have wanted to write about this for quite some time but Hallie’s drawing moved on several levels in the judging process (as it should have). Once again, I am so grateful for sweet children that are so kind to my Eliza.
Eliza and Hallie at last year’s iRACE for MLD
THANK YOU HALLIE!!!
April 27, 2011
We had this 3 generation photo taken a couple months ago for my mom’s birthday. I was so happy Eliza opened her eyes and that Caroline sat relatively still.
April 25, 2011
HAPPY belated EASTER!!!
We had a wonderful Easter at home this year and the girls were excited to find that the Easter Bunny visited while they were sleeping. He left a trail of candy eggs from each of their rooms that ran down the hallway, stairs and to rooms that had more surprises waiting for them. The Easter Bunny left Eliza some noisy eggs that we were able to shake and lead her to her big surprise. I asked Eliza a couple weeks ago what she hoped the Easter Bunny would bring and whenever I mentioned shoes she gave me a BIG blink. The Easter Bunny listened and brought her two pairs of sandals, the new Silverlicious book and plenty of Kit Kats.
She wore her new Easter dress to church and she got a little grin on her face as people told her how beautiful she looked – she loves hearing that!
April 21, 2011
Eliza and I were able to start our day off in a very fun way. We opened her 22nd and 23rd Eliza’s Library this morning at the Ronald McDonald House in Salt Lake City (Main House and Second House). The money for these libraries was raised by the The Rotary Club of American Fork and the Women in Business group in Utah County. I was a guest speaker at their meetings a while back and they were able to raise enough money to open three Eliza’s Library. They were also kind enough to make the drive up to be there this morning. Special thanks to Glenn, Debby and Carrie who made it all possible. We hope the children and their families will enjoy the books while they are staying at these amazing facilities.
Isn’t this house amazing? It was built in the late 1800s and it was absolutely beautiful. The Main House is wonderful too but I didn’t get a photo of that location.
April 11, 2011
Eliza was so cute at school today! I love getting little reminders that she truly does know what is happening around her and that she has the ability to learn new things. Today was our first day back from our spring break and she seemed a little drowsy. She was awake for the first little bit of class but she fell asleep after I fed her. After about 30 minutes of her sleeping I thought I should just take her home. I said to her teacher, “I think I am going to take her home because she is out cold.” Within seconds, I heard her grind her teeth and open her eyes a little as if she was telling me that she wanted to stay.During class, the kids do something called “workshop” where they pair up with a partner and go through a series of little tasks (i.e. reading high frequency words, drawing shapes and solving simple additon/subtraction problems). Eliza’s favorite part is always when the kids recite the alphabet with the sound(s) each letter makes. It is like a little chant and I think she enjoys the rhythm of it. Today was one of those moments that I wish I had my video camera with me because it was obvious to see that she knew many of the letters. She was alert as the kids did the chant and she blinked quickly along with the beat. She didn’t do it on every letter but she definitely responded to the letters that are in her name along with a few others. I have no doubt that she has picked up on many of the things going on around her in kindergarten. She also enjoyed going to PE and playing fun tag games with her friends. During one of the games we were tagged so we had to join the “spiders” and chase the “flies.” One little guy in her class came over to her and said, “You are the best spider!” Eliza immediately got a little grin on her face after receiving this sweet compliment. Kindergarten has been so much fun for Eliza…and me! She loves listening to all the movement, voices and activities going on around her and it is neat for me to see how the kids care about Eliza. They are so sweet to her! Sending her to school was a big decision and a risk. We recognized that she would be exposed to more germs and possible illness but it has definitely been one of the best decisions we have made.
April 8, 2011
I was just doing some updates to this site and I wanted to mention an amazing organization that I learned about at Christmas time. As you might remember, at Christmas we decorate the bottom of Eliza’s tree with letters of service. Some of our sweet friends introduced us to the Starfish Foster Home in China through their letter. They donated clothing and supplies to the foster home and I wanted to learn more about it. I was amazed and touched when I read about the services that are provided in this foster home to these sweet children. It truly touched my heart and I wanted to hop on a plane and go volunteer (easier said than done right now). For now, I was happy to donate some books that I hope the children will be able to enjoy. Visit the link below to learn more.
April 7, 2011
This week has been Eliza’s Spring Break from school so we have been trying to do something fun each day of the break. She has had play dates, dinners with friends, a trip to the zoo and a trip to the farm. We know she will be excited to get back to school next week.
April 4, 2011
HAPPY 6 YEARS AND 1 MONTH TO LIZA LOU!
It is so strange to type 6 years old! We are definitely going to celebrate with a Kit Kat/Peptamen shake tonight!
March 29, 2011
Fundraiser follow up! Here is a link to an article written about the fundraiser at Boulton Elementary.
Eliza’s Library Article in Davis County Clipper
March 24, 2011
THANK YOU, BOULTON ELEMENTARY! I know I say this all the time but people are so wonderful! I am constantly amazed and humbled by all the kindness that is shown to our family, especially to Eliza. Today is another one of those days. The sweet Student Council at Boulton Elementary did a Valentine’s fundraiser for Eliza’s Library. Students at the school could purchase Valentine Grams that would be delivered to their friends in the school on Valentine’s Day. One sweet little girl even bought one for Eliza, even though we don’t go to that school! They rasied $680!!! The student council then used the money raised to buy books for Eliza’s Library. We were supposed to go to the school on Eliza’s actual birthday but unfortunately, she still wasn’t feeling well. We rescheduled and we were able to meet with them today. A couple of these children live in our neighborhood and they are constantly showing love for Eliza…and she loves them too! We know these students put a lot of work into this fundraiser and we truly appreciate everything they did.
Sweet Madilynn (whom we don’t even know) wanted to buy an “I LOVE YOU” ducky for Eliza. Eliza’s excited little sister has moved it somewhere in the house so it is not featured in the photo
Thank you so much for thinking of our little Eliza!
We have a lot of exciting things coming up for Eliza’s Library – at least 4 more libraries in the works!
March 7, 2011
Last week was wonderful and filled with so many amazing opportunities and memories. At the beginning of the week, Eliza and I placed her 21st Eliza’s Library in a lab at The Orthopedic Specialty Hospital (TOSH). TOSH is a very well respected facility known for its orthopedic surgical care, rehabilitation, physical therapy and sports performance training. Back in 2007, Eliza and I were referred to TOSH for water therapy when her diagnosis was CMT. It is a great facility that helps improve the lives and health of many people in our community. Setting up the library was extra special because we were finally able to meet another sweet friend named Kinzie. Her dad, Todd, works at TOSH and he was the one who arranged for us to put the library there. She is a sweet 17 year old girl who lives with many challenges but I thought the smile on her face said it all. Her eyes were twinkling so much that I could not take my eyes off her. I was able to get some cute photos of her peeking her head through Eliza’s stroller to wave at her. Their sweet family even brought Eliza a birthday present – a cinderella blanket and some new books. Thanks again to the Carton family and TOSH.
On Thursday, we had another wonderful opportunity. Our friend, Chris arranged for us to attend the Mormon Tabernacle Choir practice where the choir of 400 talented singers sang Happy Birthday to Eliza. We are certain that it is the loudest Happy Birthday she will ever hear, not to mention the best sounding. Have a listen…
MoTab sings Happy Birthday to Eliza
The down side of the week was that Eliza came down with the flu! She had a really rough day and a couple of bad nights. However, she was keeping her liquids and medicine down and we were ready to party on Saturday night.
We decided to have a swimming party since that is one activity that Eliza can still participate in. She doesn’t last as long in the water because she gets cold easily but I think she enjoyed it while she was in there. She even went down the water slide with her dad!
HAPPY BIRTHDAY, ELIZA! Here is to another great year!!!
March 3, 2011
We are counting down the hours until Eliza turns the big 6 years old tomorrow!!! It is such an amazing milestone and definitely one that I never dreamed we would see her reach. We are blessed beyond measure to still have our sweet daughter here with us. It has been an exciting week and the celebrations are going to continue through the weekend – Eliza’s birthdays are a big deal around here! I plan on doing one big birthday update once the parties are over and things have settled down but I wanted to spread the word about something else that starts tomorrow. My friend, Kim Drury is a graphic designer and she is the one responsible for the Eliza’s Library logo. She had two cousins who suffered from MLD and she is constantly extending herself and reaching out to other families affected by MLD. This is actually how we met. A few years ago I was trying to get some things organized for Eliza’s Library and I made the comment to my husband that I wish I knew more about graphic design. I wanted to create a professional website, a logo, little stickers for the books…and I didn’t know how to do it. I was so tired and overwhelmed. Our lives had been turned upside down but it was important to me to honor Eliza and do some of these things for her. I just didn’t know exactly where to start. Within a couple days after making this statement, I received the sweetest email from a woman that lived in Missouri. She had come across Eliza’s story and told me about her family’s experience with MLD. For anybody who has a family member with a rare disease like MLD, meeting someone else who can relate is very comforting. There was an instant bond and we did not even know each other. It was the last sentence of the email that was even more surprising to me. She ended by saying – If there is anything I can ever do to help you please let me know. I am a graphic designer if you need help with anything like that. My mouth completely fell open! It was such a wonderful reminder to me that when we are going through difficult times, many wonderful people are placed in our path to help us. We are never alone in our challenges. Well, Kim has done it again! She is helping another family that has two children with MLD. Starting on Eliza’s birthday, she is holding a sale on her designer templates and all the proceeds will go to the Price family. It is such a great cause and the templates are darling! She even named the cute pink one “Eliza Kate” in honor of our Miss Eliza. I hope you will take a moment to follow the link to learn more about the Price family and MadiLu Designs.
February 27, 2011 I have a lot of people ask me how Eliza sleeps at night. Right after her diagnosis, she had a very difficult time sleeping. When she would sleep, it was usually because we were laying by her and rubbing her back. It seemed as though we needed to be right next to her and holding her hand or back to get her to relax so she could fall asleep. We moved her from her crib into our guest room with a large bed so I didn’t have to sleep on the floor. Luckily, that only lasted for a few months and she has done pretty well ever since. She sleeps in her own room in her “big girl bed.” Every once in a while I will hear little noises coming from her room that will wake me (I always sleep with one ear open). Whether it is grinding her teeth or a different/louder breathing pattern, she always finds a way to get my attention and let me know that she needs me. Tonight was one of those nights. I heard her about 4:30 in the morning and went in to help her. She was running a little warm and her tummy was full of a lot of air. After I took care of the problems she drifted back to sleep but now I am wide awake so I thought I would take advantage of the quiet time and post a little update. About one month ago, I had the girls’ photos taken as a surprise for Callahan’s Valentine’s gift. I think Eliza and Caroline are both looking so much older and I wanted to capture their ages. However, Miss Caroline had other ideas. She was a typical toddler who didn’t want to sit still and didn’t understand why I needed her to stand in the middle of a backdrop when there were so many fun toys just right outside the door. I kept pumping her mouth full of Smarties with the hope that she would slow down and sit for a minute. She was far from cooperative and I was certain that the photos were going to be a flash of her bolting out of the room. I was so excited to get the disc back and find that there were multiple photos that I loved. From the looks of these, it appears that she was cooperative. Eliza on the other hand was an angel and even showed us her “big eyes,” which I was so excited about. Thanks again, Megan for capturing my girls.
We are leading up to Eliza’s big 6th Birthday and she was able to gear up by attending four of her friends’ birthday parties this week (three in one day)! She was so excited. On Thursday, she was invited to a princess party where the REAL Ariel came to play and make princess crowns. Eliza was even able to be the first clue in the treasure hunt – “Who is lying down and is as beautiful as Sleeping Beauty?” Apparently, the girls immediately knew the clue was talking about Eliza and they found the next clue in her back pocket. Yesterday was the birthday marathon! What could be better than three birthday parties in one day!?! Especially when the themes were Indiana Jones, Starwars and Project Runway. Eliza had a wonderful time and we appreciate her sweet friends that always think to include her. February 16, 2011 Remembering a sweet friend…
February 14, 2011
Our family had to say goodbye to a dear friend of ours last night. Our sweet friend, Isaac passed away this morning at the age of two. He had an unknown form of leukodystrophy, which he bravely lived with his entire life. Every time we saw him he was happy, smiling and had his arms behind his head like he was laying out in the sun. He was cared for by the two most wonderful parents who worked tirelessly to make sure that his every need was met and that he was comfortable. He is now with his sister, Macy who also had the same disease and passed away at the age of 6. We will miss sweet Isaac but we are comforted knowing that he is much more comfortable now and able to do things that he could not do while he was living here on this earth. Our thoughts and prayers are with his sweet family that loved him more than I can express with words. We are grateful that we had the chance to see him last night, hold his hand and give him some kisses. We love you, Isaac and we will miss you. Until we meet again.
Eliza and Isaac presenting the yellow jersey at the Tour of Utah – August 2010
February 3, 2011
Miss Eliza has had a great week this week and it isn’t over, yet! On Monday, we opened her
20th library
in the office of Childern’s Landing Pediatric Dentistry. This office definitely wins the cutest office award! They have a very welcoming and child-friendly space and we hope the patients there enjoy the books! On Tuesday, she was having a very sleepy day so I decided to let her sleep through school so she would enjoy dinner with some dear friends later that night. To my surprise, she pretty much slept the entire day and through most of the dinner. I guess some days we all need a little catch up! Today, we went to the Children’s Museum and lunch with some friends from the neighborhood and we had a great time. It is always entertaining to watch Caroline run from activity to activity. We hope she develops a longer attention span sometime soon! Tomorrow is Eliza’s 5 YEAR & 11 MONTH BIRTHDAY! Can you believe it?!? We have arranged to have a babysitter watch Caroline so we can take Eliza on a special date to see our friends perform in Fiddler on the Roof. We are looking forward to spending some quality one-on-one time with her.
January 25, 2011
Eliza had a very productive trip to the dentist yesterday. Around Christmas time, we noticed that she had some loose teeth. Over the past month, she has been pushing on her front tooth a lot with her tongue, which was pushing it back into her gums and off to the side. My brother is our dentist and he said he would take some X-rays to see if the permanent tooth was ready to come down. Not only was the front tooth ready to come out but she had some teeth loose on the bottom. We decided to take care of all three while we were there so she didn’t run the risk of swallowing and aspirating her teeth, which a few kids with MLD have done! She was so incredibly brave. They had me lay in the chair and then I laid her on top of me. I know, we are a circus! I held her hands and she stayed amazingly still. I kept reassuring her that the Tooth Fairy would be extra kind to her for being so brave. Thank you to Uncle Jason for being so patient with us and understanding our situation.
She was a little sleepy when we got home!
Uncle Jason gave me a little tooth box to keep my treasured teeth in!
The Tooth Fairy left me a new book, some money to go shopping and a nice note–
Eliza-
Greetings from the Tooth Fairy! I saved your house for my last stop tonight. Your teeth come from the bravest little girl I know! Thank you for being so good to your friends and family. I know they love you very much. You are an inspiration to many, including me. I LOVE YOU!
Love,
The Tooth Fairy
January 21, 2011
#19!!!
Eliza and I just returned from opening her 19th library! Her newest library is up in the Davis Diagnostic Resource Center in Farmington, Utah. This is the district office where we first went to discuss enrolling Eliza in kindergarten. It is where all the assessments and evaluations take place before the child is placed in the classroom. The people in the center were so wonderful and took all of our input into consideration as they decided the best placement for Eliza. We were especially excited about this library because I know it will get used by many children like Eliza. Thank you Heather, Jim and the rest of the DDRC team! January 16, 2011 Just a quick update. Eliza is feeling better and back to her regular self again! What a sweet girl. It absolutely breaks my heart and worries me when she is sick. I always feel like we have dodged a bullet when she starts feeling better and things get back to “our normal”. I can tell she is excited to be feeling better as well because she has given me several little smiles, which are hard to come by. We are looking forward to spending time together over the long holiday weekend.
January 12, 2011
Eliza caught a nasty bug of some kind over the weekend and has been out of commission this week. Poor thing! It is so hard to know what is wrong when she cannot tell us if her throat hurts or if her tummy is bothering her. I think it is a flu bug because she is doing many of the same things that she did a couple years ago when she had the flu – throwing up, low temperature (instead of a fever) and a strange kind of seizure that we don’t see very often. Bodies can be so strange! We are going on day 4 now so I hope things start improving soon.
January 3, 2011
HAPPY 5 years and 10 months, Eliza!!!
Sweet Eliza stayed awake all day yesterday (I think she was excited to be back at school), which means today was a tired one. She was awake for the first hour or so at school and has been asleep every since. I can always tell when she is especially tired because she will sleep in her car seat. I brought her into the house and she had her hands clasped together. She used to do this all the time as a baby but I haven’t seen her do it for years so I had to take a picture – thanks for humoring me! We love you, sweet girl!
Catching Up on Christmas…
My mom and I will be busy reading a lot of new books this year. We already finished the first box set of Junie B. Jones. I think she is pretty funny!
This is how the bottom of my tree looked on Christmas morning. Thank you to all my friends for writing me such sweet letters.
December 27, 2010
We had another wonderful Christmas as a family, which is always a huge blessing to us. Throughout the day, I kept looking at Eliza and marveling that we still had her to hold. What more could we want for Christmas?!? As always, the letters to Eliza were amazing. It took us over an hour to read them all to her because there were a lot of tears. Thank you to everyone who took the time to help another in honor of Eliza. One thing that I have learned through our entire experience with Eliza is how giving people are. I am constantly amazed by the kindness of others – both whom we know and those we have never met. Not only are people giving but they are so creative in the ways they give. I have truly learned so much from all of you and I have tried to implement those things into my life by serving others just as you have served us. I have so many people ask me what my favorite act of service was, which is too difficult to choose. So, starting last year, I posted a simplified list of what we read Christmas morning. My list cannot do the letters justice because they always have special messages to Eliza that are always so heartfelt and amazing. But, if you are anything like me, I get a lot of great service ideas from others so I wanted to share the letters in a more anonymous way. LETTERS TO ELIZA 2010- *bought groceries for a neighbor that was having a hectic day * I will enlist the help of my friends and family by extending the “Secret Service challenge” and with their help, we will perform over 1,000 small acts of kindness * volunteering in a radiology unit once a week * collected clothing, medicine, and baby formula to send to the Starfish Foster Home in China * helped another with home repairs * babysitting a little sister so a special kindergartener can go to school * reading to my sister and helping her learn her letters * put Christmas lights on the outside of my sister’s house for her * made sandwiches and helped feed the homeless * I will think of you when I choose someone to donate free dental work to * bought dinner for a friend and purchased nicer gifts for their family (he said normally he is cheap) * I did small acts of service each month for someone special in my life – missionary packages, gift cards, and cards of appreciation * helped my brother after he had surgery * I was a listening ear for a soldier that was being deployed to Iraq for one year * collected books for Eliza’s Library and went through them to make sure they were “right” for your library * I will help 12 others (12 days of Christmas) in need, whether it is a meal, chid care, rides or a listening ear * we provided financial support to several families in need * not complaining about painful shots I have to get * took toffee to some neighbors to help them get well * cleaning the kitchen without being asked * I will be more kind to my brother * making a meal for my family * I will invest one hour per week in learning how to do family history research and then provide temple ordinances for those individuals * bought gift cards and hot chocolate for a homeless man who was shivering in the cold * helped babysit my newborn sister * helped my mom and cook and vacuum * caring for sick children in the hospital * helping my sister learn her sounds and alphabet letters * I want to tell my school class about Eliza’s Library and then collect books * I offered a neighbor a ride home from the store – apparently she had been waiting for a cab for two hours * I will be a friend to anyone friendless * I will shovel my neighbor’s driveway * I am going to save my money and buy books for Eliza’s Library * I will read Eliza a story * I will shovel our driveway so my dad won’t have to * I will try to be more aware of those who are struggling and do what I can to ease their burdens. I will more quick to say kind words and notice the good in others * making lunches for my siblings * a hug and a kiss for you and shoveling snow for my neighbor * I will give books and blankets to the E.R. * I helped a family member who is struggling personally and financially * I helped move light fixtures and heavy things for my elderly neighbors * we donated new toys and money to families in need. We have also prayed for and sent encouraging notes to friends who are sad * helped my friend have a better Christmas this year * collecting books at my birthday party for Eliza’s Library * I helped furnish an apartment for a single mother. We collected plates, cups, toys, books, a bed, dresser, nightstand, chair couch, food and more * I will provide a car for a family that has recently lost their father * I will be your friend in Primary (he spelled it – PRIMMERE) * I will be nicer to my family * I am going to help my neighbors with their yard – pulling weeds, mowing lawns and shoveling snow * My family gave 20 lbs. of food to the poor * Our family made a donation to the Primary Children’s Hospital NICU in your name * We invite a neighbor that lives alone over for dinner once a week and we try to notice others that might need help * I helped a family pay for a grave marker for their stillborn baby * My girls and I would like to come to your house and read our favorite books to you * I helped someone that needed help in the store before my dad asked me to * I will make a new friend and be there for them * unlimited free haircuts * I am going to give each student in our kindergarten class a Magic Treehouse Book in honor of you
Isn’t that amazing!?! Thank you so much once again.
December 24, 2010
The letters under Eliza’s Tree are piling up! This is definitely our family’s favorite Christmas tradition. I cannot tell you how exciting and touching it is to read those letters to Eliza. She usually gazes off or falls asleep when we are opening her toys, clothes or whatever else we have given her but the moment we lay her on her bed and begin reading her Christmas letters, her eyes widen and she breathes deeply. She loves hearing the names and the acts of service that have been performed for her. This year, Channel 4 contacted us and wanted to do a story on Eliza’s Tree. Barb Smith heard about our little tradition last year and said she had been waiting all year to do the story. She was wonderful! Not only did she take time to interview us (and watch me cry), but she stayed in our home for an hour following the interview and just visited with me. What an amazing person who is as personable and genuine off the camera as she is on the camera. Thank you, Barb.
FIVE YEAR OLD BOUNTIFUL GIRL INSPIRES ACTS OF KINDNESS
December 19, 2010
This weekend we had our annual Christmas get together with the other MLD families in the immediate area. There aren’t very many of us so we enjoy getting together to visit. It was great seeing everyone!
MERRY CHRISTMAS from Eliza!
Ready for Christmas Sunday!
December 14, 2010
December has been a very fun and busy month around our house. This week, we were able to go see the lights down on Temple Square, which is always amazing. We have been enjoying some warmer weather so we decided to take advantage of it and go downtown. For those of you that have never seen it, the grounds spread over several blocks (the blocks in Salt Lake are much larger than other city blocks) and every single tree and bush has lights on it. It is absolutely incredible – by far the most impressive light display I have ever seen.
On Monday, we were able to go ice skating at the Maverik Center. The most exciting part was that Eliza skated too…in her stroller!!! She even took a few laps around the rink with Santa Claus!
December 10, 2010
The Sohm family learned about Eliza and her library last year and decided to collect books for their family Christmas project this year. They did an amazing job and collected over 260 books. It always touches my heart when parents and grandparents take time out of their busy December to teach their children and grandchildren the true meaning of Christmas by actively serving another, even those they have never met. It is something that I hope my girls will learn as they get older as well. We are honored to be the recipients of their thoughtfulness this Christmas season. 
Here are a couple photos that were emailed to me. Thank you, Sohm family
December 4, 2010
Eliza had a very special December Birthday this year. Happy 5 years and 9 months, Eliza!
Santa & Eliza. She definitely made the “nice” list this year.
Santa shared a couple stories with the kids as well.
Caroline wasn’t quite so sure. I thought she may be more relaxed when Santa came to our house that night but we got the same reaction. It was pretty funny.
That evening, Santa was kind enough to visit our home for Eliza’s little birthday party. You may be asking yourself, “How did the Williams get the real Santa Claus for Eliza’s December birthday?” It turns out that Santa Claus likes to ride bikes when he isn’t busy making toys in December. He met Callahan at a biking event and wanted to learn more about teamgive. He found a link to Eliza’s site and contacted me back in the spring/summer about visiting her for Christmas. It was such a generous offer and we set the date months ago.
Visiting with Mrs. Claus & Santa
It was a wonderful day and I truly appreciate the thoughtfulness and generosity of Santa and Mrs. Claus. THANK YOU!!!
November 26, 2010
OUR FAVORITE CHRISTMAS TRADITION ~ Three years ago, we were still coming to terms with the horrible news about Eliza’s diagnosis. The toy and Christmas ads started flooding our mailbox and I remember flipping through pages and just crying. What were we going to get our sweet little girl? It seemed more difficult to get excited about a very meaningful holiday. We decided that we needed to think outside the box when it came to gifts for Eliza. This is how Eliza’s Tree began. In 2007, we invited our friends and family to join us in a new tradition. As a gift to Eliza, we asked them to perform an act of service (big or small) for another individual in honor of Eliza. We then have them write it down, seal it in a envelope and put it under Eliza’s Tree. On Christmas morning, we still open a few gifts with the girls but our favorite part is reading the letters to Eliza. In fact, for the past couple of years, Eliza has not been very alert as we have unwrapped her presents but she always perks up as we begin reading the letters. She seems to enjoy hearing who they are from and what exciting acts of service have been done. I wish everybody could sit in Eliza’s room with us as we read these letters. It is a very special thing to us. Here is a link to a newspaper article that was written about Eliza’s Tree last year ~ TRUE CHRISTMAS SPIRIT GROWS ON ELIZA’S TREE We would like to invite all of you to participate with us again! Feel free to bring the letters by our home or mail them to Eliza’s Library ~ 90 W. 500 S. #118 Bountiful, UT 84010
HAPPY THANKSGIVING!
November 25, 2010
WE LOVE MARRIOTT!
I was contacted a few months ago by the Marriott Vacation Club about a service project (friendly competition) they were holding in their offices. We were honored they wanted to collect books for Eliza’s Library. And boy, did they collect books! They collected over 3,000 books!!! 2,000+ were children’s books, which we were lucky enough to receive. We were able to take Eliza down to their office and meet the winning group. They were so sweet and presented Eliza with a Christmas book, which they all signed. Thank you, thank you for your thoughtfulness! Their book drive helped us reach another exciting milestone for Eliza’s Library…over 20,000 books collected and donated!!!
November 15, 2010 Carin the wonderful has done it again! For my birthday present, Callahan arranged for my friend to take our photos (she is the one responsible for all the beautiful photos on Eliza’s site). Over the summer, I had been getting anxious because I didn’t have an updated family photo of the four of us. Normally, I am not one who loves having my photo taken but ever since Eliza’s diagnosis, photos mean so much to me. We only had to drive 5 minutes from our home to get this beautiful backdrop! Thank you, Carin for always being so understanding and patient with us as we try to situate Eliza and make her comfortable. We cannot wait to add some of these photos onto our walls. Thank you for sharing your talent with us.
November 12, 2010
Eliza and I were honored to speak at a Women in Business Conference yesterday in Utah County. Each year, they choose a couple charities to spotlight and raise funds for them. Eliza’s Library was lucky enough to be one of them. I was able to show Eliza’s Library video and talk a little about her. Afterward, we were able to participate in their service activities. In a couple hours we were able to fill bags with educational supplies, decorate a Christmas tree to be donated to the local Festival of Trees, cut and tie fleece blankets and participate in a live & silent auction. It was a great afternoon. Before it all started, I was talking to Debby (the woman who contacted me about coming) and I was complimenting her community involvement. I loved the response she gave me – “How else will they know we were here?!?” That statement ran through my head all day. It is so wonderful to have opportunities to serve others and make a difference. It is something that we should all work towards. Hopefully by the end of our lives, people will know that we were here and we contributed by helping those around us. An exciting side note – It’s official…Eliza’s Library is now a 501 (c) (3) public charity!!! It has been 2 years in the making and all the paperwork and jumping through the hoops is finished. Now all donations to Eliza’s Library are tax deductible. YEA!!! Thank you, Sam for making it possible. November 5, 2010
Eliza opened her 17th Library today!
Foothill Dental in Salt Lake City
October 31, 2010
HAPPY HALLOWEEN from COWGIRL ELIZA!
We have had a wonderful time celebrating Halloween this entire week. First, Eliza had her Halloween party in kindergarten, which she was really excited about. She got to listen to Halloween stories, play Halloween BINGO, bowl with a pumpkin, decorate cookies and most importantly, be with her friends in their fun costumes.
Immediately following school, we went over to the church for the Primary Halloween party, which was also great. We decided to get Caroline dressed up for the party too. She could not have been more thrilled to be there. She didn’t not stop moving the entire time we were there. She kept checking up on Eliza and wanted to help push her stroller around the gym.
Last night, we braved the rain and visited some of our neighbors to trick-or-treat. It was great visiting with them and we were given some candy that we can blend up with Eliza’s Pediasure. The rain didn’t really put a damper on the evening because we were able to go home, order pizza and cheer for the Utes! It was a great night.
October 27, 2010
HALLOWEEN PREVIEW. CAN YOU GUESS WHAT ELIZA IS GOING TO BE?
MANY THANKS TO OUR FRIEND DEB WHO HELPED CREATE COWGIRL BOOTS FOR THE MOST POINTED FEET OUT THERE. CHECK BACK THIS WEEKEND TO SEE THE ENTIRE COSTUME.
October 26, 2010
Sunday was our Ward’s Primary (children from age 3-11) program, which is always one of my favorites. The kids were entertaining, as usual, and they did something very sweet for Eliza – they dedicated the first song to her. “I am a Child of God” is a church song that she has always really responded to. When I spoke to the Primary children a few weeks ago, they asked if they could sing a song for Eliza. I picked that one and I just stood up there and cried as I held her and listened to lose cute voices sing extra loud for her. It was very sweet, thank you!
I am a child of God and he has sent me here
Has given me an earthly home with parents kind and dear.
Lead me, guide me, walk beside me. Help me find the way.
Teach me all that I must do, to live with Him someday.
I am a child of God and so my needs are great.
Help me to understand his will before it grows too late.
Lead me, guide me, walk beside me. Help me find the way.
Teach me all that I must do, to live with Him someday.
I am a child of God rich blessings are in store.
If I but learn to do his will, I’ll live with Him once more.
Lead me, guide me, walk beside me. Help me find the way.
Teach me all that I must do, to live with Him someday.
I am a child of God. His promises are sure.
Celestial glory shall be mine if I can but endure.
Lead me, guide me, walk beside me. Help me find the way.
Teach me all that I must do, to live with Him someday.
October 21, 2010
This site was giving me fits a while back and I wasn’t able to post this when it happened so I wanted to put a plug in for this amazing organization. Eliza’s #14 Library was put in a very deserving and special place by our great friends at eBay. Friday’s Kids Respite is a non-profit organization that provides free respite care to families with children with special needs on weekends so the parents can go out together. When I was in graduate school, the founder came and spoke to our class and I was so impressed by her and this concept. At the time, I didn’t have any children but I remember thinking what a blessing it must be to families who have to take a much needed break. Now I truly understand how important it is. Here is a link if you would like to read on.
Since we have family close by and an amazing circle of friends, we have our own “respite volunteers” that help us. I will forever be indebted to all of our friends and family who are willing to help with our girls so we can get a break every so often. There are days when I just need to turn my brain off, take a breath and walk aimlessly through Target 
. I am also so grateful for my family and friends who watch Caroline so I can take Eliza to kindergarten. It was something that I really wanted to do and I appreciate the help that makes it all possible. THANK YOU!!!
October 18, 2010
At the beginning of the school year, I noticed little rubber bracelets around the wrists of many of the kindergarteners. I couldn’t figure out what they were. Some were jagged and some were smooth. One of Eliza’s friends clued us in on Silly Bandz (we are so out of it)! One day, we were waiting in line outside after recess and cute little Mason, who is in the other kindergarten class, walked over and handed a silly band to Eliza. He shyly said, “I thought Eliza would like this.” It was a yellow Silly Band that spelled “Cool.” My heart just melted because I thought it was so sweet of him. I know I mention this every time but I love these sweet kids!
October 11, 2010
PUMPKIN PATCH We had a great outing to the pumpkin patch this evening with my brother and his family. It has become a fun tradition to go on a hay ride into the pumpkin patch and handpick our pumpkins. Callahan and I were each holding a girl and quickly realized that we needed extra hands to get our pumpkins back to the tractor. Luckily, my brother was willing to carry them back for us. We joked that we picked the biggest pumpkins on purpose just to give him a workout.
October 8, 2010
Eliza’s 16th Library just opened! Thanks to my sweet friend, Jenny, we were able to place an Eliza’s Library in the University of North Carolina Children’s Hospital. This library has a special importance to me because of its wonderful location and the amazing children it will serve (I am not biased or anything)! Dr. Maria Escolar is a neurodevelopmental pediatrician who is considered one of the leading experts on leukodystrophies in the United States. Many of the children with MLD travel long distances to see Dr. Escolar and gain insight from her knowledge. We have never made the trek back to her clinic with Eliza but we hear nothing but great things about her. A few months back, my friend contacted me and said she wanted to be involved with Eliza’s Library in some way. Her husband is currently back at Duke doing his residency and she wondered if there was something she could do long distance. I became so excited because I knew exactly what I wanted to do. I wanted to put a library in Dr. Escolar’s office so it could benefit some of Eliza’s friends with MLD.
Jenny went above and beyond to help make this come together. When she was out in Utah visiting her family, I loaded her down with the furniture for Eliza’s Library, which she managed to check onto the plane along with herself and two kids! She enlisted the help of some wonderful young women in North Carolina to help her paint the table/chairs and collect books.
Dr. Escolar is currently in the process of moving into a new office space but she had Jenny deliver the library to the temporary location so the children could start enjoying them. For now, the library is in a room where children with compromised immune systems (like Eliza) can wait so they are not exposed to anything.
MANY THANKS TO JENNY, HER FRIENDS IN NORTH CAROLINA AND DR. ESCOLAR
FOR HELPING MAKE THIS HAPPEN!
Last weekend our family took a little trip to St. George for a little change of scenery. We had a great time swimming, relaxing and shopping. Here are some photos from the trip.
Catching some rays at the pool.
Some of our friends were down there too so we invited them over for a swim
October 1, 2010
This amazing news story will bring tears to your eyes. Thank goodness for compassionate and caring people like this young man.
September 19, 2010
iRACE for MLD
We had beautiful sunny weather for the race!
There was another event going on at the park and
They had hundreds of flags lining the race route.
Eliza and Caroline completed the race with some of our
favorite girls. Thanks again, ladies!
Some of Eliza’s friends from kindergarten came too.
She has already made some great friend this year.
The Darringtons (5 out of their 6 kids have, or have had, MLD).
They came all the way from Idaho to support the race.
Our friends from eBay in front of the Lambo!
Many thanks to all the runners and volunteers that helped make the race a success!
September 11, 2010
Three years ago today, we received Eliza’s MLD diagnosis. What a difficult day it was. I never thought I would ever hear those words, “There is no cure. There is nothing you can do.” We watched our only child go from a mobile, chatty little girl to a little girl who was in so much pain that she couldn’t sit in her car seat without screaming and whose big vocabulary had quickly diminished into three words. Within a matter of weeks, those words and movements were gone but the horrible pains in her body still remained for months until we were able to control it with medication. There isn’t a way to describe how hard and saddening it was. Well, three years later, Eliza is still with us! This is also something that I never imagined would happen. I remember praying that she would make it to Christmas and her 3rd birthday. I become more and more grateful with every milestone she hits because I know that we are now living on borrowed time.Her strength is absolutely amazing to me. What an example she continues to be to our family and those around her. We have learned so much in the past three years and I feel as though it has changed us for the better. We are so grateful to have her. I love you, my Liza Lou!
September 9, 2010
From the mouth of a kindergartener… One of Eliza’s classmates asked us, “Can I ride with you in the alligator” (elevator) ——————————————————————————————————————————————————————————————————–
iRACE for MLD is almost here!
Saturday, September 18th
10:00 am
South Davis Recreation Center
There will be amazing prizes, fun atmosphere and incredible food! Please join us to support a cause that we are very passionate about. Follow the link to register
http://teamgive.org/events/irace-for-mld
September 8, 2010
SCHOOL The past couple weeks have been very fun and busy around here. Eliza LOVES kindergarten! It has been so much fun to go with her and help her experience everything. The first week, the kids would look at her from a distance, smile and ask questions occasionally – “Why are her arms and legs so skinny?” “Why is she in a stroller?” I love it when people ask questions about Eliza because I feel like it helps them realize that she has some limitations but she is still the same little girl that likes to have fun. Both kindergarten teachers had me talk to their classes a little about Eliza and answer any questions the students had. This was a great ice breaker and it helped them understand her situation. Now, everywhere we go, Eliza has a little entourage that surounds her stroller. They like taking turns pushing her stroller down the hall, which is hilarious because they will hold on wherever they can – two in the back, one on each side and usually one clearing the way in front. It is a sweet sight to see. Since the school is two stories, we get to ride in the elevator, which is a fun novelty for them. I also look for ways for them to help her learn. The other day, our friend sitting next to us was watching me color with Eliza. I asked her if she wanted to help Eliza and she jumped right up. It was darling to watch that little hand hold onto Eliza’s and help the crayon move around the page. I am so grateful for sweet children!
Eliza’s Grandma gave her a pretty red dress for school. As always, she is awake but keeping those eyes closed while she sits up.
FROM THE MOUTH OF A KINDERGARTENER
The kindergarteners say the funniest things too. I need to start writing them down because they crack me up! On the second day of school, I had the following conversation with one of the little girls– S: “My Dad told me that we need to always be kind and helpful to people like that” Me: “Yes, they are amazing people.” S: “He said I should not be mean, but I am not going to be mean to anybody. This school is SO MUCH FUN!”
August 27, 2010
Hello Everyone- Registration is now open for the 2nd Annual iRACE for MLD. Come join us for a great morning! Come run, walk, push a stroller or volunteer. As always, there will be some amazing prizes given away and all the money raised will go toward MLD research. Follow the link below to register — http://teamgive.org/events/irace-for-mldWe would love to see you there! Nikki
August 23, 2010
KINDERGARTEN!!! Eliza (and I) had a great 1st day today. She was SO EXCITED and she had a little grin on her face the entire time we were getting ready. The district and school have been wonderful about working with us and allowing her to have this wonderful experience. She is going to be in a regular kindergarten classroom with her cousin, which is what I think she would have chosen herself. I wasn’t interested in draining the district of services and I thought having people manipulate her body would bother her more than anything so, I waived my right to an aide, occupational therapist, physical therapist etc. and I get to take her to kindergarten and stay with her. I am so excited to spend that time with her and create some memories and friendships with her.
Dressed in her favorite color – yellow and with daisy fingernails, Miss Eliza was ready!!!
August 18, 2010
Eliza has been blessed to have many wonderful people in her life who genuinely care about her. One of these amazing individuals has been our friend, Kelsee. Kelsee is a neighbor of ours who started babysitting for us about 4 years ago. She is always so sweet to Eliza and we never have to worry when Eliza is with her. In fact, when Kelsee would come to our house, Eliza would look at me and say, “Bye bye!” I also have a video clip where I asked Eliza who her friends were and she quickly says, “Kelsee!” Eliza truly loves her, as do we! After Eliza was diagnosed, I thought it might make Kelsee uncomfortable or nervous to babysit her. Plus, she was 16 years old and I didn’t know if she would want to babysit on weekends when she could be out on dates. A little time went by where we didn’t have babysitters. Kelsee came up to us and asked when she could babysit again. I explained how I didn’t want to make her uncomfortable in any way and she assured me that it wasn’t a problem, and it wasn’t. Kelsee has been an absolute life saver! She is leaving for college tomorrow and we are truly going to miss her but we are very excited for her. St. George is a fun vacation spot for us so we plan on visiting from time to time…she cannot get rid of us that easily! We love you, Kelsee. Thank you, thank you for always being so wonderful to our family.
This photo was taken on Halloween last year. Kelsee came home early from her date because she wanted to see the girls in their costumes before they fell asleep.
August 17, 2010
teamgive PEDAL POWER FESTIVAL…part one!
Tonight was the first of three Pedal Power Festivals that we (teamgive) have been put in charge of. It has been a really fun project and tonight went well. We expect the events to get better and better as the week progresses. Here are a few photos from tonight…
Since it was so hot, we decided to let Eliza stay home and rest. She will come to the next one.
Pretty majestic backdrop!
One of the flights getting ready to start
There were a lot of fun activities at the festival afterward. Even the Jazz Bear wanted to get in on the “Tour of the Banana!”
August 10, 2010
Tonight the girls and I went to help my nephew with his Eagle project, which was for Eliza’s Library. He did a book drive that brought in over 540 books and enough money to furnish a library. We will post photos of the finished project later. For now, here is a picture of the two of them that was taken last year.
August 4, 2010
It’s the 4th of the month again, which means…it’s Eliza’s birthday again!
HAPPY 5 YEARS AND 5 MONTHS,
SWEET GIRL! WE LOVE YOU!!!
August 2, 2010
Our cute neighbors are at it again! Today they had a little lemonade stand set up across the street from our house and since I am a sucker for lemonade stands, I had to go over. Plus, we live on a quiet street that wouldn’t bring in a lot of business 
About one hour later there was a knock at our door. These sweet girls handed me a plastic cup of change and two $1 bills. They said they wanted to donate the money for Eliza. I tried to tell them that they didn’t need to do that but they were very persistent and walked out the door.