Thursday, December 22, 2011

The Holidays...

Well, I figured it's been a month and a lot of people are asking how we're doing... so here's another update!

Many people have questioned how we're doing since the holiday season is upon us and it's our first everything without Skylar. To be honest, we're doing pretty well. Obviously we miss her more than we could ever express, but for me, her birthday was the hardest day to get through. As I said in previous posts, birthdays were always a big deal in my house and I loved it!!! It was always something I wanted to make special for my own kids as well - a day all about them and filling it with love. With Skylar gone, that day was absolutely miserable. It was all about her, but she wasn't here and it was hard to be positive even though she's not suffering anymore. I am so glad that day is behind me and I hope next year won't be as miserable.

As for Thanksgiving, we were able to be with family and enjoyed our time with relatives. We focused on being thankful and kept moving forward. With Christmas approaching, we are taking the same approach... spending time with family and friends and focusing on the true meaning of Christmas - the birth of Jesus Christ and what that means in our lives.

We're grateful for the people who have surrounded us with love and continue to support us as our lives change. Speaking of change, I realized I never posted a picture of my tattoo so here it is:


The text at the top says "I Shall Arise" to match what we have on Skylar's gravestone - the latin version "Resurgam" (I know the text is a bit difficult to read - I am going back in January to get a few things changed to make it a bit easier to see). I described this in detail in a previous post, but here it is again so you don't have to search for it...

The orchid is purple because that is the color I had picked out for Skylar, even though she was so stinkin' cute in pink. It's also the color associated with royalty and the color I associate with Jesus in Heaven. The flower has a gold center, also representing Heaven and the light that Skylar was to us. The base of the orchid has three leaves - representing the trinity, but also our family of three. Within each leaf is written "Faith" and "Hope" and "Love" to express how Skylar has helped us to grow and what our priorities are in life. It's my physical "scar" to represent the trauma and pain we've been through.

I didn't really plan on it being as big as it turned out to be, but it's just another symbolism of Skylar's life. I had something completely different pictured in my head, something much more dainty and thin. However, when Matt at Only You Tattoo in Atlanta showed me this drawing, I really liked it and decided to go with it. As a friend said when first seeing my tattoo, "go big or go home!"

There are so many things in life that turn out differently than we hope for - sometimes for the better and sometimes for the worse. I am starting to realize that the key is to roll with the punches and keep smiling.

Another update on change: Kyle let his hair grow out to his shoulders and was able to donate it (meaning he buzzed his head)!!! He has never had hair this short since he was a young boy, but it looks awesome - especially with a slight beard growing. I don't have any pictures yet, but I'll try to get some over the holidays.

So lately, I've seen some hilarious yet disturbing holiday videos (google jimmy kimmel christmas presents video to see what I'm talking about). I've seen some startling images - one of starving kids in Africa holding their hands up for food displayed right next to a picture of several moms with shopping carts full of toys fighting for their place in line. I've also witnessed the craze as Atlanta drivers somehow multiply exponentially to shop for the holidays and meanwhile forget to show basic courtesy and follow driving laws in the process. It's a bit overwhelming. I hope we are all able to sit back, take a deep breath, and relax. This season was not meant to be a stressful one... Somewhere between Santa and Christmas trees, the real story was lost and commercial marketing took over. It became a morning of presents instead of a season of anticipation and celebration. I know I've been guilty of getting "too busy" with work and have really had to challenge myself to set time aside to be still and re-focus my priorities.

Regardless of our situation, I hope we can all be grateful for the lives that we have - our health, our comfort, our friends and family and our homes this holiday season. Merry Christmas and Happy Holidays to you all. May 2012 bring many blessings for you! Peace.

Saturday, November 19, 2011

Remembering Skylar

Today is the day we are supposed to celebrate Skylar turning 2 years old. However, this has not been a day full of celebration. For me, it has been a day of avoiding tears.

I felt it coming. All week has been super emotional (ladies, you know what I mean). I have been dreading today because I knew it would be a day of salt in my wounded heart.

I think today has been the hardest day since we buried her. Regardless of how hard I try to focus on the positive, what I have to be thankful for, I am constantly brought back to the reality that my daughter is gone. A day that I would normally be having a party, making sure that Skylar's world is full of everything that she loves, I have an empty toddler's room. Today is supposed to be all about Skylar. A day set aside to focus on her,  love her and celebrate her birth. If only she were here...

Every time I think about Skylar, tears fill my eyes. Mainly because I miss her, but I am also still mourning the life we should have had if things were "normal" for us. We would be baking cupcakes, running around the park, chasing after kids at her birthday party and who knows what else. I would get to see Kyle as the amazing "fun" dad I know he is... as I get glimpses of him interacting with other kids we know and love. Today has hurt. It totally sucks to be a parent without a child.

I don't even know what to do with myself. There's not a lot to celebrate because Skylar's not here... I could celebrate her birth, but I am reminded that I will never have that birth experience again since SMA took our only daughter. We can't stand the thought of going through that again and are taking measures to prevent it. The last thing I want to do is bake a cake for my baby who is not able to eat it because she's dead. Everything that I would do is pointless without her here. I know she is in Heaven and no longer suffering. That is something to celebrate, but my heart's not able to go there today. She's probably the one celebrating, so maybe that makes up for me not celebrating. In Heaven, she's not bound by time (that I know of) so I don't think there are birthdays to celebrate there. I would guess that every day is a celebration with God, Jesus and all the followers of Christ who have gone before us as we were made to worship. I imagine the story of Colton from "Heaven Is For Real" and picture Skylar talking to Jesus, hanging out with my Aunt Theresa, our grandparents who have passed on, meeting John the Baptist and being amazed by her wings and all the colors around her. That warms my heart some.

The good news is that we were able to spend today with people we love and keep ourselves distracted. Tomorrow is a new day and I will be happy that this is behind me. Thank you for all of the love and support we felt today.

A big thank you to Soteria Productions for volunteering their time to help film the memorial (at a last minute request) and put this together for our family. We are so grateful for your support and help through this journey! Also, thank you to Tessa from Light Love Laughter Photography and Sarah Harms for taking a few of the images used in the video. We love you all so much.

Just a warning that the memorial video is the full length version so if you want to watch the whole thing, please allow yourself an hour to finish it. Also, the beginning clip somehow got flipped so the text is backwards - that will be fixed soon. Peace.

Skylar Marie Jones' Memorial from Ashley Jones on Vimeo.

Tuesday, November 8, 2011

Catching Up...

Hey Everyone,

I want to apologize for waiting so long to post something. I was trying to hold out until I had the memorial video in my hands since I teased you with that in my last post, but I still don't have it... I realized that if I waited any longer, I would be so far behind that no one would read my post because it would be forever long.

So catching you up on our lives:
Kyle and I went to Greece and we survived. We are still married. Two huge accomplishments after a long and crazy trip. We enjoyed our trip and got to see a lot of amazing places as we traveled from Athens to Crete (the large southernmost island of Greece) to Santorini and back to Athens. However, we had to skip out on Milos and Kea - two islands we were hoping to see - because the traveling was unreliable. There were tons of strikes while we were there. One day we would go to the lobby and there would be a sign that said all taxis were on strike for 24 hours. Then the next day, there would be a sign that all archeological sites and museums would be closed for 48 hours due to a strike. The next day it would be the ports. Then, one day, all forms of public transportation were down (metro, taxis, buses, etc.)! It was just ridiculous.


We had some great stories though. I ran into one of my sorority sisters on Crete... For those of you who know me post college - yes, I was in a sorority, lol. I was the "sober sister" in KD. Kyle and I were walking through a small port town on the southern non-tourist part of the island and all of a sudden I hear, "Ashley?!" Kyle immediately hangs his head and chuckles to himself, "Of course you would know someone here" and I look to see my friend and her mom! It was such a pleasant surprise and we ended up tagging along with their tour for part of the day. We hiked the Samaria Gorge and then went our separate ways.



It was so nice to have some other people to speak english with and have conversation. We also climbed Mnt. Kofinas, hiked to several breathtaking beaches, ate some amazing food, met funny people, explored Santorini, walked around Athens and more. I even got to be a "wedding photographer" for a couple who had just gotten married and were in Santorini. They were trying to take pictures on their camera with a tripod and a timer so I asked them if they wanted me to take pictures. They agreed and I was able to get some really fun shots and they walked away. A few seconds later, I am assuming they walked around the corner to look at the pictures on their camera, they came back and were so excited and thankful for the photos and asked me to be in a picture with them. It was really cool. If you want more stories or more details, feel free to ask me, but I don't want to bore everyone on the blog.


Some not so great stories (besides the strikes) include or bank account being deactivated because we didn't know we had to alert our bank if we were leaving the country with our credit. Then, an ATM machine in Athens ate my debit card. We got stuck in one city for several days because our boat couldn't leave due to bad weather... yes, it rained for days while we were there. Supposedly, it never rains in Greece. We had to pay 50 Euros (approx. 75 dollars) for a freaking taxi ride because that was the only mode of transportation working the night we flew into Athens and they knew they could rip off tourists with a flat fee to the city.

Something else that really hit hard while we were over there was the news that Aleena Miller, the daughter of Stephanie and Aaron Miller (who founded the Hope & Light Foundation) had passed away. It was a complete shock and devastating as we could imagine what they were feeling. Aleena was 7 years old with type 1 SMA and had been fighting with the help of a bi-pap machine and her amazing parents who gave everything for her. She was healthy and had been making a ton of progress with a communication device that relied on an eye-gaze system so her death was completely unexpected. Our hearts and prayers were with that family as soon as we received the email and continue to be as we walk along the road just a few steps ahead of them.

All in all, we have some amazing memories, incredible pictures and funny stories, but we are so thankful to be home. I don't think we realized how isolated we would feel in a country that is falling apart with people who don't speak english. It was not the second honeymoon we hoped for, but the goal is to plan another trip next year for our 5-year anniversary to make up for it. 

Our anniversary was November 3 and we're still in disbelief that we've been married 4 years. So much has happened that makes us feel ancient, and yet sometimes it seems as if we're just coming up on year 2.  We had a nice anniversary though and are enjoying getting out together. For everyone who sent us a gift card to use going out - THANK YOU! We have really enjoyed trying new restaurants, getting out of the house and just having dates again.

The day before our anniversary, Nov. 2, was All Souls Day, which followed All Saints Day. I had not been too familiar with this in the past... Honestly, I can recall hearing the names, especially the Day of the Dead, but knew nothing else about them. Wikipedia will tell you a lot though :) Even though we're not Catholic or Mexican, we really liked the idea of celebrating All Souls Day with Skylar's body. So on Wednesday, we drove up to her grave for the first time since we buried her. It was hard, but good. Sitting by her grave, knowing the only thing that separated us was some dirt and some wood, was so extremely difficult. I wanted so badly to be able to hold that little hand, stroke her soft hair, cuddle up with her and look into those eyes. It was awful. The feeling of separation was almost unbearable. However, it really made me think of the separation that Jesus felt as He hung on the cross. The separation that most of us feel from God. What that is like for eternity. I like to think that God loves us a million times more than I love Skylar and wants to be with us the way a parent longs to be with their child. Anyway, staring at your child's grave will make you think about such things. 

It's hard losing a child in so many ways. One of the saddest things to me is how someone who meets me post-Skylar can't know she was here until I tell them about her. I can look at you (whoever is reading this still) and know that even if your parents are deceased, you had to have a mother and father to get here and at one point they existed. People can't look at me and know that I had a child even though she's gone. So I decided to fix that. I got a tattoo in memory of Skylar on my forearm from my wrist to my elbow. The latin word "Resurgem" is translated as "I Shall Arise" or "I Shall Rise Again" which is what we have on Skylar's gravestone. I had "I Shall Arise" tattooed on my wrist. Right below that is an orchid. It's purple because that is the color I had picked out for Skylar, even though she was stinkin' cute in pink. It's also the color associated with royalty and the color I associate with Jesus in Heaven. The flower has a gold center, also representing Heaven and the light that Skylar was to us. The base of the orchid has three leaves - representing the trinity, but also our family of three. Within each leaf is written "Faith" and "Hope" and "Love" to express how Skylar has helped us to grow and what our priorities are in life. It's my physical "scar" to represent the trauma and pain we've been through. 


When people say, "wow, that's a beautiful tattoo" or whatever may come out of someone's mouth, I can reply by telling them about Skylar, raising awareness for SMA, sharing the symbolism I mentioned above and making people more aware that you don't always know a person's past so don't be so quick to judge. It will certainly be interesting to see all the reactions though because it's a lot bolder than I planned it to be. Skylar's life was also a lot bolder than I planned it to be though so it works. Picture coming soon.

I think that's about it for now. Kyle and I both are slammed with work and are super busy, which is good for the most part. We've recovered from Greece and are so thankful for our amazing support system around us. We'll certainly need it as Skylar's 2-year birthday is coming up soon. I can't speak for Kyle, but if I am being honest, I am not looking forward to that day because I know it's going to be depressing. 

Thursday, September 29, 2011

Change.

I don't know who said "change is good" but they obviously didn't like where they were in the past. Lately, we've gone through a ton of change. I don't know that I would say it is good or bad, but it's just change.

One of the first big changes to happen was switching vehicles. We had been using a van to transport Skylar around in her handicapped stroller that was graciously on loan to us by a family I was friends with in high school. Since we no longer had a need for the van, we switched cars and I got my blazer back. I love my blazer. It's a sport edition with a lift and great off-road performance. Despite it being a 2003 and needing some minor repairs, it's been a fantastic car. It was a pain in the neck to try and get a car-seat through one of the two doors, but since we're a couple again, that's not an issue for now. It was a strange mix of emotions getting into it for the first time again.

Our second big change was getting all of the medical supplies out of Skylar's room. Everything in the original packaging is boxed up now and ready to ship it to FSMA for them to send out to families in need. I'll have to arrange that when we get back though. There are still a few things here and there that we will send out individually, but it's nice to get most of the stuff out. That was also a change full of mixed emotion. On one hand, I was glad to be done with it, but of course, I was sad because it means that my little girl is no longer here. I'm not too sure when we'll get to the rest of her room... that makes me sad thinking about it.

It's been a hard realization that I will never see Skylar again in my life here on earth. As a Christian, I have the hope and faith that I will see her in Heaven, but it makes me sad that I have the rest of my life on earth without her. Not having her here brings me to the third major change. I cut off all my hair!

I know, you're probably thinking, what?! Back in 2007, I donated my hair to Locks of Love (making wigs for kids with Alopecia) - Kyle actually went with me to the salon when we were dating and cut my ponytail off. Well, I planned on keeping my hair relatively short after that. At some point when I was pregnant, either from trying to save money or being forgetful - or both, I realized I had let my hair grow out quite a bit. I remember saying, "as soon as our baby starts yanking on my hair, it's coming off!" Well, months went by after Skylar was born and one day, my hair was annoying me. I thought to myself, why in the heck have I not cut this off yet?! And it hit me - Skylar didn't have the muscle to pull on my hair ever... So I reached down to grab her little hand and let it run through my hair. I have never heard Skylar squeal with delight the way she did that first day. From that moment on, playing with my hair became a regular event to make her smile and I was happy to grow it out so she could have as much hair to play with as possible.

Well, as you can imagine, long hair is long. When it gets long, and is as thick as mine is, it gets heavy and harder to keep healthy. After Skylar passed, I no longer had a "need" to keep it and had planned to donate it again. This time, I cut my pigtails off myself which was fun and I am donating my hair to Pantene ProV (making wigs for women who have gone through chemo due to cancer). It's a great cause and my hair will grow back. I'll probably donate it a few more times if I am able, but for now, I'm happy with a lighter load. Here is a picture of me with one of my "tails" -


A lifestyle change that has taken place is the ability to go out again. I've had a really great time catching up with old friends who were too far away or had too many kids to make things work when Skylar was here. When Kyle was traveling for work, I ended up going to visit some SMA friends out of state, because I could! I drove to the Grimes' house to hang out (they lost their Annie girl in August 2010 at 9 months old - type 1 SMA) and enjoyed going to an apple orchard, seeing a movie and other fun things. I also went with the purpose to help take photos and work on their vet clinic website and materials. Eddy Grimes is a veterinarian and started his own clinic - it's been fun to see the business take off and do so well. I'm hoping to bring Reese to see him in November! Here is their festive family below :)


Then, I couldn't help but drive to Knoxville, TN to visit the Gooden family and sweet Nora! If you've been reading the blog for a while, you may recall that Nora was the only other SMA child that Skylar got to meet. They held hands and I am sure communicated on a level we will never know. Nora is much stronger than Skylar, thankfully, and is already over 2.5 years old and doing extremely well! I got to see her when I went up to support the Paint Away SMA event and have been missing her ever since. This visit, I was able to spend a few days with them and it was wonderful. I can not believe how grown up she is now!


Nora is so alert and smart - like most SMA kids. She's actually starting school at home so we worked on the letter "B" and sang songs together and I got to learn all sorts of Nora things. She makes the most adorable pirate face. She also likes to pretend to sleep and then laughs, which is hilarious. It truly was a great visit - Nora has captured my heart from day 1 and her parents are so wonderful too. I am so happy that they have the ability to communicate with her some and are able to enjoy the life they have together right now. I just wish we lived closer! Leaving was awful though. I obviously miss Skylar, but I cried half the way home because I was so sad that Nora has SMA, that her parents are going to go what we went through, and there is absolutely nothing I can do to prevent it.

I read this analogy in the FSMA monthly newsletter - that having your child die is like being hit by a semi-truck. I've since come to understand that it's true. As I laid on the pavement on August 16th, I didn't want the cars to keep going by. I wanted the world to stop around me - because my world stopped - but it didn't. As I slowly picked myself back up, I found that I could stand with Kyle. Then I discovered that ever so slowly, putting one foot in front of the other allows you to move forward. However, I am stuck on this road and I can't get off. Every now and then, another car or truck will come by and hit me again - I collapse. I cry. I get back up again. I find that my feet will keep moving. Sometimes I can sense it coming... other times it just hits me out of nowhere. I am guessing that as the time passes, getting hit by those trucks will still hurt like hell, but might be less frequent. I am always going to be on this road though. My child is gone and is not coming back. I have a piece of my heart that is missing. I so wish there was something I could do to prevent other people from experiencing the pain. I can see them on the road. In the distance, there is a truck. My road is not their road though, and I am helpless. I can yell, I can scream, and believe me, I can and do plead with God. Even though we don't always get answers, at least I know that there is a strange peace and comfort in the midst of it all and I hope that other people feel that too.

Well, that was a strange rambling thought for 5 AM so I better stop now, lol. We're leaving for Greece soon. I was truly hoping to get the memorial video up before we left, but it's not going to happen. It's totally my fault because I wanted to add something to the video that required editing, but my friends who are going to edit the video have been on vacation (I only do photos - video is a whole other animal), so hopefully it will be done when we return and I will be able to post it then. Thank you for being patient and for still reading my blog :) Next up: Memorial Video and Greece Pictures! Peace.

Wednesday, September 7, 2011

Fundraising For SMA

Hey Everyone,

I hope to have the video of Skylar's memorial up soon, but it will probably be in the next post so I hope you can wait to see it...

In the meantime, I wanted to update you on the Brushes of Hope fundraiser we did to "paint away SMA" at Sips N Strokes. The place was packed out (around 80 people) - mostly with people I had never met before. At the beginning, I was able to say a few things about SMA and Skylar with only a brief moment where I got choked up (despite it being only a week and a half after we lost her). Wendy LaVoy, the artist behind all the great paintings, came to our location to teach the class, which was very special. She even offered to sign people's artwork and t-shirts that people purchased that night, in addition to selling her famous window paintings with a portion of the proceeds being donated to FSMA.
 


We were able to raise a lot of awareness (they posted the event on their facebook page) and also money to be donated to the GA Chapter of FSMA. The Sips N Strokes staff at Sandy Springs have been amazing and we're so grateful for their support - THANK YOU! We hope to do another one in a few months for those of you who wanted to come but were unable to make it! Below you can see me and a good friend from high school who came out to paint with her mom. The painting of the night was titled "Funky Owl" which I chose because Skylar's room had an owl theme - and it was just a super cute painting that I thought most people would enjoy.


Even though everyone paints the same picture, it's really fun to see how they turn out differently! It's a really cool way to learn different techniques while painting and walking home with something you can hang on your wall. Sips N Strokes also hosts parties and events - they have kids nights too if you're bored and looking for something to do!

As far as updates go with Kyle and I - we're very excited to take a 2nd honeymoon and have decided to go to Greece! It's somewhere we've both wanted to go, but never thought we would have the chance so soon. Family and friends have been extremely generous in donating money to us specifically for our vacation and we're so thankful. If you have any recommendations for places to stay in the islands of Greece, feel free to leave a comment! I'll keep you updated and will certainly post pictures!

My birthday was bittersweet. I obviously missed Skylar, but was able to get out to celebrate with family and friends enjoying great food and fun times. Over labor day weekend, Kyle and I drove to NC to celebrate my birthday together. Kyle and I stayed with a wonderful family (old friends of Kyle) who made us feel so at home in their mountain house. Then we spent one night in Asheville before heading back to ATL. We enjoyed local festivals, amazing restaurants, great hiking and fun times together.

Kyle is back into work and I am getting ready to launch my new company for photography, graphic design and consulting. The company is Skylight Creative Group and is partly named in honor of Skylar :) Also, I love using natural light or "skylight" for my photography when I can and the creative group part came from offering a group of creative services. I just created a facebook fan page for it and I'm working on the website (www.skylightcreativegroup.com). With completing administrative stuff and editing pictures from a newborn photo shoot, I certainly have plenty of work to keep me busy!

If you're in the Atlanta area, mark your calendars for Sept. 22 when the Hope & Light Foundation will be having their Dine Out Night partnering with local restaurants to raise money for SMA research. You can check out their website (www.hopeandlight.org under events) for restaurants involved and details, but if you visit a participating restaurant that evening, a portion of all profit made will go to the Hope & Light Foundation!!! We'll be heading over to the VA Highlands area to join them and hope to see you there too! Thank you Hope & Light for featuring Skylar on your website - that was such a sweet surprise when I checked out your website for the Dine Out Night info :)

Check back in a week or so for the memorial video - thanks for keeping up with the Jones'

Peace.

Wednesday, August 24, 2011

Missing Skylar.

Skylar Marie Jones. We were so blessed by her short little life. It is hard to believe a week ago, we held her in our arms as she left this world and was welcomed into Heaven and then buried her in the ground. So much has happened in this one week - it is honestly overwhelming to think about...

Kyle built a box for Skylar which was absolutely beautiful. I cried as soon as he showed me the finished project because I was so sad that he even had to make it; I was also crying because it was so perfect for her. I am so grateful to have a husband who can build things and who wanted to build a box for her in her resting place. Skylar really does have the best daddy in the whole wide world.

We drove Skylar's body to a natural cemetery in SC on Wednesday. I know some people are wondering what is so special about SC... (Besides the fact that we went to Clemson) Well, the graves are within the forest and everything is natural - no clear cut fields with giant headstones. There are hiking trails throughout the forest that take you by the graves marked by natural rock from the preserve. A creek flows along the border of the grounds and is so peaceful and beautiful nestled in the mountains. It is a place that we would want to visit again. There is a natural cemetery in Conyers, GA, but we always thought that we might end up in SC some day.

Kyle and I dug her hole, placed her box in the earth with her inside, and buried her. It was so surreal - I couldn't believe what we were actually doing. It was just me, Kyle and our pastor. It was our final act as parents to care for our little girl and make sure she was taken care of until the very end. It was everything I could have ever hoped for in a burial. Our pastor prayed and read scripture when there were no words to say and then we went down to the creek to clean our hands from the clay. It was very symbolic on a number of levels. Kyle's hands were covered in mud and sweat that mixed to look like blood. As he submerged his hands in the water and pulled them out clean, I couldn't help but think of baptism. I thought of the resurrection. I thought about my little girl in Heaven and Kyle and I being complete as parents. "It is finished."

So that was only Wednesday of last week. We then had Thursday and Friday to process things before the memorial. The quiet in our home is deafening. Ever since Skylar was a couple months old, there has usually been a constant noise from her equipment, her movies or her sounds. Not only is it quiet, but it's so lonely. Typically, Kyle or I would be home with her at all times (unless Nurse Natalie was watching her while I ran out to grab food or go to a doc appt.) so that one of us would be here if something should happen. We've traded off church services, tag-teamed gatherings with friends, picked up carry out and brought it home so we could eat together and so on. Now that Skylar is not here, when one of us is home alone, you can't help but notice the emptiness in the nursery. It's sad to see her empty bed begging us to come snuggle up in it. It's hard to stand in the silence because your mind starts to re-visit things. I try to think about her bright eyes welcoming me as I walk into the room, her sweet little hand hugs as I sat with her to watch movies, and her little giggles as I did the most ridiculous things. It usually ends in tears as I realize that I will never get those moments again even though I am so grateful for the memories.

It's so sad not to have her with us. Missing Skylar is what brings the tears. We know she's so much better off in Heaven and so we're not sad for her. We're just sad we're not with her. We know that our lives were meant to go on and we still have purpose to our lives - so we keep going. I'm still holding on to my survival phrase throughout the diagnosis and fighting SMA, "Focus on the positive and take things a day at a time - a moment at a time if that is what is required." You can't dwell in the past because that's already come and gone. You can't live in the future because it hasn't happened yet and you really have no clue what is going to take place. However, you are in the present and you can make the most of the time you have right now. I've also learned that God can meet you in the present for that very reason - it's where you are. I've had to be honest with where I am in the grieving process and it has been tough, but I really feel that God has given me peace and comfort beyond my understanding.

All that to say, when Saturday came, we had already done a lot of grieving and were glad to see the faces of so many whom we love. It was a beautiful service. Thank you Matt, Jeff, Candace and all the others at our church who worked behind the scenes to make things happen and take care of us on Saturday and throughout this entire journey. Thank you Marty for your songs, your music and for your heart. Thank you Kris McDaniel for your time, energy and love that you have poured into our family over the past two weeks. I truly can't imagine where we would be without the consistent love and support from our church family. You have shown us what the church was meant to be. To our friends and family who have walked with us on this journey - we love you and are so grateful. We want to thank all of you who came out on Saturday to love and support us as well - friends, family and co-workers. I know many could not make it who wanted to be there... We hope to post the video of the memorial here on the blog soon so that you can be a part of it and hopefully be comforted by it as well.

We have a lot of people still wanting to know what they can do to help us specifically. Honestly, the thing that we would probably take advantage of the most are gift cards to restaurants. Kyle and I have not been out together as a couple but a couple of times in the past year and a half. As much we are missing Skylar, it's really nice to be able to go out together as a married couple again. We don't really have a budget for eating out all the time though :) Also, I am just going to throw it out there that my comfort food is Yoforia (the yogurt shop around the corner from us). As nice as those things are, we don't need anything. We're doing pretty well all things considered. However, we are looking forward to taking a second honeymoon at some point to re-group and chillax (for those of you who have not seen Despicable Me, that means chill out and relax - you should watch it). Other than that, we're taking it a day at a time and working to figure out our "normal" again. Kyle will be jumping back into work and I am working on launching my own photography and graphic design company.

Anyway, I see that I am back to my normal self typing a novel so I will let you go for now. Stay tuned for the memorial service and more updates. Again, for all of you who are concerned about us and how we're doing, we have a great support system - great counselors, amazing friends & family. Thank you again and peace to you.

* PS - I believe the painting fundraiser this Saturday is full. It will definitely still happen and I look forward to seeing those of you in attendance at Sips N Strokes.

Tuesday, August 16, 2011

Skylar Marie Jones

It is with heavy hearts as we share the news that our precious Skylar is no longer with us. Kyle and I were able to hold her this morning as she took her last breath. We miss her more than words can express.

Our journey with SMA has been a long and tough one, but certainly not without joyous moments and full of love. It is because of that deep love that our hearts are hurting beyond belief right now. However, with that great pain comes great comfort in knowing that she is fully restored and present before our Lord Jesus in Heaven right now. As we continue to grieve, we will also continue to learn how to move forward, how to live and how to love. Skylar has taught us so much in her short little life (just shy of 21 months) and we are so grateful for the wonderful gift she was to us.

For those of you who have been impacted by Skylar, we are having a memorial for her this Saturday for all who want to come. It will be held at our church, Trinity Anglican Mission, at Two O'Clock in the afternoon. We've had lots of people ask already who to make donations to for SMA research instead of sending flowers and we're requesting donations be made to the Hope & Light Foundation. Our church is still accepting donations for our family expenses, but I think we have most of our costs covered now - we'll let you know if that changes.

Thank you all for your prayers and support throughout this long and intense journey. We will continue to need them as we find our way through the grieving process, but have already felt a peace and comfort beyond human understanding. Thank you for all who have sent text messages, emails and facebook messages. Please know that every word is being read, even if we don't respond. We feel so very blessed to have an incredible support system - including our doctors, nurses, church leaders and family, friends, neighbors and of course our own family.

Peace to you.

Monday, August 8, 2011

SMA Awareness Month

Well it's been a long second half of July. We're still trying to figure out what's going on with Skylar... We went to the doctor a few weeks ago and there weren't any definite symptoms of anything, and there hasn't really been any this whole time. We're seeing high heart rates regularly (letting us know she's uncomfortable and possibly in pain) but no fever or anything else. We've gotten a few stomach issues that have come and gone, but nothing consistent (which makes us think it's not just teething). We think there might be some bladder issues, but have no definite test results to stand on with that either.

She's not really able to come off her bi-pap anymore and so we're learning how to live with the equipment 24/7 until she gets better... we know there's a chance that she won't be better though. That's the unfortunate thing with a degenerative disease. We're still getting giggles here and there and tylenol is our new best friend so we're doing alright.

Please pray for our Nurse Natalie. She suffered a severe broken arm last week and will be out of work for months. Not only will we miss her tremendously, but she's got 4 kids at home and won't be getting a paycheck while she's out of work. We are trying to find out what her needs are at this time to see if we can help her family as a community. We'll keep you posted if there is a way to help if you're interested.

A few weeks ago, some good friends of ours from high school had an emergency c-section (the cord was wrapped around the baby's neck multiple times and her movement had slowed) and both survived and were doing well. However, shortly after, the baby was moved to the NICU and was struggling to eat well. Days later, they received the diagnosis of down syndrome (unrelated to the emergency c-section). I went to visit and took some pictures for them. It was a great visit and was so much more full of hope than my last visit to the NICU at Northside. Even though they were facing a serious diagnosis that will change their lives, their child has the hope of living a full life. It may be different than what they imagined, but that doesn't mean the future holds any less importance. In fact, I think it's quite the opposite.

So like I said at the beginning of this post - it's been a long second half of July. As more and more suffering is made visible to me (I learned of a new disease called EB when I found a mom's blog about her child with it and was completely horrified, a friend's family member was murdered last month, a husband abusing his wife and family, etc.), I am just so thankful for the hope that one day we will no longer have to deal with the broken world we live in. I look forward to the time when there are no more tears, no more pain, no diseases, and we are able to live how we were originally created to live. I am so looking forward to getting a hug from my little girl!

I don't want to be a Debby Downer so I'll leave you with some positive updates as well...

Here's the swing picture I promised... Daddy did a great job! We ended up using foam that we had in her crib to make the swing comfortable and it also holds her in place better. We obviously are gentle with the swinging so she doesn't roll out, but she really seems to enjoy it! Her tv is mounted in such a way that we can turn it and watch movies while we swing :)


The GA Chapter of Families of SMA is finally moving forward with events now that we've had some time to get established. We are looking to have a family meet & greet this month so that families in GA can put faces to names and hopefully build relationships with people who are going through the same things in life. More details coming soon.

Our first fundraiser is scheduled for AUGUST 27th! Mark your calendars if you like to paint, want to learn how to paint, or just want to have fun while getting messy to raise money for SMA. We'll be painting a funky owl that you can give to a friend with kids, hang it in your own kids room, or just have in your amazing art collection :) Many of you who keep up with my blog know that I went to a "Paint Away SMA" event in Knoxville, TN to support one of our favorite SMA families - the Gooden Family. I had so much fun that I wanted to do the same thing here in Atlanta and found out the store, Sips N Strokes, has a location in Sandy Springs. The studio holds up to 80 people so make sure you register online at www.SipsNStrokes.com by going to their calendar of events for the Sandy Springs location and then click on the funky owl on August 27th to sign up. The cost is $35 and Families of SMA will be getting around $10 for every person who comes. If you can't make it this time around, don't worry because we'll be doing one again in the winter when there's not much to do outside.

We also support the Hope & Light Foundation and are extremely excited for the "Dine Out Night" event where restaurants donate a portion of the proceeds from one evening of operations to the Hope and Light Foundation. YEAH Burger, which is one of my favorite places to eat (best bison burger and onion rings!!!) will be participating this year so come and join us for the fun on September 22!

Okay, I'll be updating the blog soon with any new details so the next post shouldn't be as long :) Thanks for reading and stay tuned!!!

Monday, July 18, 2011

Daddy's Birthday Today!

So I am pretty sure Skylar is a Daddy's Girl... Not only did she save her teeth for Father's Day, but she's doing her best to get well for her Daddy's Birthday today!

Yesterday was the first day that we saw better heart rates, although we're still not out of the clear just yet. So far today, we're doing a little better and I have figured out that Skylar likes to sleep to Enya. I mean, who doesn't? We're giving Pandora radio a chance on the iPad right now and so far so good. Although as I type that, the pulse ox alarm went off because her oxygen dipped down too low.

As I think about what Skylar would be able to do as a 20-month old (as of tomorrow), I know she would probably love to give hugs, run around like a giant amongst friends (she's in the 92 percentile for height and not even on the chart for weight!) and would definitely be saying mommy and daddy by now. I can only imagine that she would be climbing on things like her dad - maybe even getting in to trouble too :) I bet she would squeal with delight if Kyle could pick her up and throw her in the air and catch her or chase her around the house. I know she would be a much more adventurous eater than me by now with the help of her dad. Who knows, she might even like garlic and rosemary!

But for now, we take as many "hand hugs" as we can get and as many smiles and giggles as we can earn (she makes you work extra hard for them). I wish I could read her thoughts... I know she would go on and on about her daddy and how she LOVES her new swing (pictures coming soon!), how she loves watching Kung Fu Panda with him and holding his hand. Even though she can't say it, I know she is thinking, "Happy Birthday Daddy, I love you! You're the best dad ever."

Sunday, July 17, 2011

The Big 2-0

On the 19th, Skylar will be 20 months old! It's so crazy how time flies... Daddy has a birthday on the 18th this month too :) We love you Kyle!

So I thought we were smooth sailing once we were home from the hospital, but Skylar has had a few issues come and go since we've been home.

The first happened a few days after being home when I vented her belly. I use a 60ml (2 ounce) syringe without the plunger in it, hook it up to her g-tube, and let air and left over belly fluids flow out. I will typically let all of the belly contents (aka residual) back in her belly. However, this time, a dark black brown liquid came out of her g-tube that looked like diarrhea and freaked me out. I did not let that go back in. I have seen white and clear contents (normal), and even yellow and green residual colors (not so normal) but black and brown?! I was immediately on the phone with our pediatrician and we both agreed that we'd start on pedialyte and go from there. What the heck did people do before pedialyte?!?!

The pedialyte seemed to clear things up and everything was back to normal again. Or so we thought. The past week, Skylar has had a really high heart rate, which is never good. It's usually a sign of discomfort and pain, and even the start of an illness. I think we're battling something right now. At first, I wrote off the high heart rate as a teething thing because there were no other symptoms. She was kind of congested, but no fever or anything else. Her belly was still digesting well and normal - that is, until yesterday when we got a batch of yellow residual. The good news is we have a symptom and a possible cause of the discomfort.

We've already increased her treatments to every four hours and do our best to make sure she's completely comfortable with tylenol around the clock. We're going to try a few things this week (new meds) and re-evaluate at the end of the week to see if anything improves or if we need to take a new course of action. We really really don't want to go back to the hospital so hopefully that won't be necessary.

I feel like I should mention the Extreme Home Makeover because a lot of people have asked about it. I first want to say that those little girls are extremely deserving of a new home and we are so happy that they are able to go to Disney and have this experience. We are definitely bummed, but have learned a lot through the entire process (over a year now) and are so thankful for the friends and family we have who support us. I hate to think where we would be without you so thanks! We will eventually build on the property we bought 3 years ago... Hopefully sooner than later! Stay tuned :)

Saturday, July 2, 2011

We're Home!!!

So this is going to be quick because I'm exhausted, but I wanted to let you know that we're home!!!

We were able to leave this evening and the Trilogy was so easy to travel with! We're so excited about using it more to get out on walks together and maybe even take that trip to the zoo I've been talking about for some time. Still working on it...

Skylar was a rockstar, as usual. She traveled really well and I think is really glad to be home. She's pretty much back to normal. We had some amazing nurses, fabulous RTs, and incredible doctors and truly think Scottish Rite TICU is the best place to stay if we have to be in the hospital.

We went all week without a bath and so as soon as we got home, Kyle and I bathed Skylar. She stayed off her bi-pap the whole time and even for an hour or so after her bath while Kyle and I unpacked her room and set things up for her. We finally raised her bed on cement blocks!!! Now we won't have to kill our backs and we can put more things under her bed. Nurse Natalie is probably smiling reading this...

Pediatric Specialists (our home health care company) came over to make sure we were set up with our equipment at home and that was wonderful. Once he left, we got Skylar back on her bi-pap, unpacked everything else, made dinner and now we're ready for bed. Reese dog missed us - he is laying across my foot as I type this and already tried to make out with me on the couch, lol. Have a great holiday weekend everyone!

Peace.

Going Home?

Skylar is doing so much better! Thank you for all of the prayers and encouragement!

When we got in the hospital, we put her on the new bi-pap machine and thought we'd be out in a day or two. While we were here, we wanted to get a few other things looked at as well so we didn't have to make multiple trips to different doctor's offices at a later date. When we met with GI and realized that we could leave her g-tube alone, we also talked about her nutrition.

We knew that as a big girl, being 19.5 months old and still on infant formula was not the best thing. However, we didn't want to start changing things without proper guidance. I had been working with Dr. Swoboda's team in Utah, but hadn't heard back anything due to a miscommunication - not a big deal and has since been resolved. We felt confident using the nutritionist here and also the GI doc (both very nice and educated on SMA).

We changed up her formula to a "big-girl" formula, but that is when the fever hit. I asked a few different doctors if the feed change could have caused the fever and everyone told me no - it is completely unrelated. We ran a bunch of tests and so far everything has come back negative - we're still waiting on a few more to come back, but we're not suspecting anything. We switched back to the formula we were on originally and the fever has gone away and she's back to her normal self. We're still on 10 days of antibiotics just in case, but we're confident we are going to be stable. Yesterday was our first normal day and today has been great - we really hope to go home tomorrow!

After talking to the nutritionist in Utah, she has actually seen several SMA kids develop fever and high heart rates as a result of an intolerance to formula. Who knew! We have a game plan once we get home and comfortable again, but for now, we're holding steady.

This week, we've had the pleasure of meeting many new nurses and doctors, but we've also had a great time visiting with old "friends" as well. Estrella, the nurse who put on the SMA conference and came to Skylar's 1 year birthday party, has been working the past couple days as our nurse, which has been amazing. I don't have to worry about a thing! We also have had some amazing RTs (respiratory therapists) and other staff too. I am so excited about the progress being made in SMA education here at Scottish Rite and hope we can help spread it even further. As much as I want to go home, we've had a nice time here - as nice as a hospital stay can be.

Anyway, the only reason we would not go home tomorrow is if our home health care company refuses to work on a holiday weekend (which they staff people for and should be able to take care of us)... In that case, we would be here until Tuesday. So far, the home health care company has been great with our equipment and bringing it here to the hospital. We hope to have more good things to say about them! I'll hopefully have an update about that tomorrow.

As far as the home makeover, I've been a roller coaster of emotions, but after having some people attend the pep rally, we're positive it is not us. Thank you for everyone who has supported us and helped us through this journey. We're still not giving up hope for our house - extreme makeover tv show or not. Who knows, maybe we can put together our own extreme makeover with enough support.

Well, that's all I have for now. More to come soon! Have a great 4th of July weekend!!!

Thursday, June 30, 2011

Uncharted Territory

The doctor came in today and asked what we've done in the past when Skylar has had a fever and how she reacted. I told her we never have had a fever last more than a day and this was all new to me. She was surprised - obviously a good thing - and decided to start some antibiotics to try and attack whatever is lurking in her body.

We've run a couple of tests for different things and everything has come back negative, which I guess is a good thing, but we obviously know there is still a problem and can't find it... that's frustrating. I hate watching my little girl uncomfortable, in pain, not feeling well and standing by watching helplessly. I wish I could fix it and make it all better so she didn't have to suffer.

I'm so thankful for the staff at the TICU (Technology-ICU) here because they let me be involved as much or as little as I want. I have been doing a lot of the respiratory treatments and helping with a few other things, but it's so nice to have a staff who respects us as parents and caregivers even though we don't have a degree in nursing or a specialty practice.

Kyle came up last night to bring me dinner and bring a lot of Skylar's favorite movies from home since we're going to be staying here longer. I am so thankful we live close to the hospital and Kyle can come hang out when he's not working. Also, family and several friends have come by to bring me meals and other fun goodies - so amazing! We're so blessed.

So for now, we're preparing to camp out at the hospital throughout the weekend and see what Skylar does. We've switched her feeds back to the stuff we were on at home since it's not good to implement changes during an illness. We'll hopefully get this fever under control and see if we can bust out of here!

Hope you have a great weekend!

Wednesday, June 29, 2011

Hospital Update

Well, we were smooth sailing yesterday and thought we would be going home today... However, sometime during the night, Skylar developed a fever and was not sleeping well - and by that I mean that she was asleep, but her heart rate was still really high so it was not a restful sleep.

I've been wanting to update all morning and afternoon, but the internet has been down. So here I am.

We've been giving her Tylenol and she's been trying to get some sleep, but she's still kinda uncomfortable. We're trying to figure out the cause of it... We switched her formula last night to the big girl formula and she didn't digest it really well, but that wouldn't cause the fever. We've lowered the rate of her feeds to give her belly a break in hopes that she'll slowly adjust to the new formula and will continue to keep working back up to her normal rate. In the meantime, we have a few ideas as to what could be causing her fever, but have to do some testing and won't know until tonight or tomorrow.

I'll keep you posted.

In other news, we actually heard that there is a family near Madison, GA who might be a finalist in the Extreme Makeover so we're no longer holding our breath to hear Ty on the 10th of July. However, we're not giving up hope completely and obviously would still love for the family chosen to be us! If it's not us, you can find me at our local yogurt shop indulging in some comfort food :)

More updates soon... peace.

Tuesday, June 28, 2011

Children's Hospital Stay

So we made it to the hospital yesterday evening for our scheduled visit to get the Trilogy. Skylar had some junk in her lung (upper right lobe) when she got here, but we've been able to clear it since then. We have been using the Vest which has been awesome! I am so glad Skylar's chest barely reaches the minimum requirement!!! Our pulmonologist stayed late to make sure we got settled in well and set us up for the night - Kyle and I can't even express our appreciation and respect for Dr. Brooks.

I LOVE Children's Scottish Rite Hospital of Atlanta. Seriously, I can't imagine being anywhere else when we need medical help. I feel so bad for families who don't have a great children's hospital close to them. I've heard awful stories of nurses being jerks, doctors giving bogus information, parents not being allowed to stay with their children overnight... and worse. Our stay has been wonderful so far and we're extremely grateful for a staff who respects our requests and is extremely friendly and helpful. Skylar misses Nurse Natalie though :)

We were slightly concerned that Skylar might be coming down with something, but it looks like teething is just causing a major secretion increase (which means more work clearing it) but it is manageable. The other thing we were hoping to get taken care of was Skylar's g-tube replacement in her belly. When we got her g-tube placed a little over a year ago, her surgeon told us they last about a year - sometimes more, but usually a year. The awful thing is that with most SMA kids, they just yank them straight out of their belly with little or no pain medication since anesthesia isn't an option due to their respiratory fragility. I am so thankful that other SMA parents warned me about this or I would have freaked if they tried to do that to Skylar! 

After talking to GI, her g-tube looks good still (even after a year and three months) so we're going to ride it out and see how long we can make it last. The doctors have said they've seen some last up to three years so we'll be praying we are one of those cases. They told us what we need to look for as far as deterioration and also explained what to do in case it falls out at home so there's not an extreme emergency. I am pretty confident we can handle it, however, I have also learned to expect the unexpected and pray. 

We're switching up her nutrition a little bit before we go home to make sure she tolerates the new formula. It's similar to what we were using, but the toddler version of it and a different brand name. I think we can get this covered under medicaid since a prescription is required, because every time you get more specialized with formula, the price goes up! I'll try to update again soon when we get to go home.

EXTREME UPDATE*** Extreme Makeover Home Edition is coming to Georgia in 12 days!!! Again, we have no clue what family is chosen and where they will be building, but we're hoping they show up at our door on July 10th! Regardless, they will be helping a family in need so if you want to get involved and possibly be on tv, check out the GA Build website. They're having a pep rally THIS THURSDAY at 7PM in Madison, GA with Vince Dooley, the Falcons cheerleaders, the builders for the GA build and the camera crew from Extreme Makeover. More details are on the GA Build Website. 

Peace.

Thursday, June 23, 2011

Super 19

Skylar turned 19 months old on the 19th this month which was pretty exciting. Not only was it her "birthday" but it was also Father's Day and Skylar had a special present saved up for her Daddy! That's right, we finally have the beginnings of a tooth poking through - her top front right one!!! I can't wait for it to come in more :) Kyle has been such a great dad and it's such a blessing that we both were able to celebrate a second Mother/Father's Day with Skylar. We thought SMA was going to rob us of that, but Skylar is such an amazing little fighter. Kyle has actually been traveling the whole month and has only been home on weekends (which is partly why I have not posted anything in a while). He has been working so hard to keep up with his job, the high work demand and time commitment, and I am so proud of him because he's doing such a great job!!! I know it's hard on all of us when he travels, but we're so thankful that he has a good job that pays the bills and allows us to have good insurance. Here's Skylar in her "Sweet Like Daddy" dress that I altered to fit her better :) The sewing is coming along great and hopefully I can start making things from patterns soon!


I feel like the two weeks leading up to Skylar's 19 month birthday were rough. Our nursing company dropped the ball and didn't re-apply for more nursing hours soon enough so we had a lapse in coverage for a couple of days until more nursing help was re-approved. Thankfully, our nursing company worked their butts off to try to push it through as fast as they could so we only had a few days without Nurse Natalie instead of weeks. Normally it wouldn't be too bad, but because Kyle was gone traveling, it was a much bigger deal. Medicaid surprisingly got the paperwork approved first so they are covering our nursing now! 


We're finally in the next step of getting the Trilogy bi-pap approved and hope to get in the hospital in the next week or so to adjust the settings and make sure Skylar gets what she needs. We're really excited about the new company supplying the equipment because they seem very customer service oriented and are friendly. We've had some bad experiences in the past with two other companies which makes my life a lot harder because I have to make phone calls, get upset and argue with people to make things right. I am hoping for a lot less of that. It seriously baffles me sometimes how certain companies can stay in business!


Anyway, for the past two weeks, Skylar has been struggling with something. A week ago, we had an extremely scary night when I was doing a normal treatment with Skylar and "coughing" her with the cough assist machine. Normally, I would say this machine saves her life on a daily basis and is the mac daddy piece of equipment when it comes to emergencies. However, last Thursday, I was using the cough assist and Skylar's oxygen saturation was dropping at an alarming rate... 70s, 60s, 50s, 40s, and with each second she turned whiter and whiter. We hit the 20s while I was still coughing her and I slightly panicked. Her heart rate started dropping as well and I think I said, "Stay with me" or something like that while trying to figure out what to do next. The cough assist usually moves anything blocking her airway, but I wasn't getting anything when I suctioned her. I was at a loss. I quick turned the bi-pap on threw the mask on her face. Slowly, her oxygen started coming back up, but the color took a little bit longer to return to her body. That night, her oxygen kept dipping into the 80s (which causes the alarm to go off) every two hours or so. I knew there was still a big mucous plug in there waiting to show it's ugly face again. Thankfully Kyle was going to be home the next evening and could help me over the weekend.

As Kyle was unloading his car on Friday, instead of opening the door to hug him and tell him hi, I flung open the door and yelled "I need your help now!" Skylar was dropping again and I needed an extra set of hands to get the oxygen tank flowing in case she dropped so low again. We've been much more aggressive with her treatments (chest PT, nebulizer meds to help open her airways, etc.) since then and Saturday we were able to get some of the chunks of mucous out of her lungs. I think today I got the last little bit that was clogging her airways because her oxygen level has been much better. We're still not where we were, but hopefully we can recover fully soon. We also just got approved to trial a "vest" that will help shake mucous loose and will become a part of our daily routine. Usually kids have to be 20lbs, but Skylar's not quite there... However, her chest diameter is at the minimum requirement so we're going to test it out and see how she tolerates it. My friend with Cystic Fibrosis has been using a vest for a long time and it's helped her tremendously so I am actually kind of familiar with it!

Skylar's been on bi-pap the past two weeks, pretty much non-stop, because we thought she might be fighting a sinus infection or a cold of some sort. It very well could be, but I also think that her teeth has something to do with it. Now that the front one is wiggling it's way through, I am hoping the others will figure out how to bust through as well. Skylar has over 10 teeth that are seriously ready to come through and it must be so painful - especially when you can't pick up stuff to chew on and ease the pain. We're giving her children's Motrin now and have been massaging her gums for some time. We'll see what happens!

Before she "crashed" two weeks ago, we were able to get some pictures of her with the goodies I won from the Gwendolyn Strong Foundation Mother's Day Giveaway. Her teeth are making her unhappy, so sorry for the not so happy face. It was really fun to get a box full of items for me and Skylar. Some of the stuff is not pictured, but we're enjoying all of it! Thanks so much for all of the vendors who donated to make a special giveaway package and help raise money and awareness for SMA!!!



It's so fun to observe her becoming such a big girl. She's about 34 inches long now and would be up to my hip if she could stand up!!! Her hair is developing into a pretty awesome mullet (I don't have the heart to cut it!!!) and she just looks like a little girl instead of a baby. I am so excited to see the rest of those teeth - I know she'll look even older!


For Skylar's 19 month birthday, Kyle, being the awesome dad that he is, built her a swing for her room!!! We have been trying to figure out how to make a swing/hammock for Skylar that would support her so she could still lay down and keep her body flat, but something that would move like a swing that could hang from our ceiling. Well, Kyle made it for his little girl on Sunday and it's awesome :) We still have one last finishing touch on it before we post pictures, but I'm so thrilled Skylar can swing now!!! We're working on logistics with her on the bi-pap machine while swinging, but it's so fun! 

EXTREME UPDATE*** Extreme Makeover Home Edition is coming to Georgia in 17 days!!! They announced it on their facebook fan page last week. We have no clue what family is chosen and where they will be building, but we're hoping they show up at our door on July 10th! Regardless, they will be helping a family in need so if you want to get involved and possibly be on tv, check out the GA Build website.

More to come soon - I just had a moment to get you up to speed on things. Hope more can follow shortly. Peace.

Wednesday, June 1, 2011

The First...

Since it's the first of June and the first post of the month, I thought it only appropriate to share a "first" that we experienced this past week. No teeth yet - don't get too excited. 

Tuesday, Natalie and I were getting ready to give Skylar a bath but noticed her stomach was really bloated. We brought her to the bathroom and massaged some gas out. You could tell she immediately felt better and was breathing better and so we decided it was time for her bath. We put her in, and like we always do, Natalie started washing and massaging her legs while I did the same with her arms and body. I was just washing her face and hair when I heard a bubble sound. Skylar had farted in the tub before, which caused Natalie and I to jump back and start laughing, but this time, some nice diarrhea came out as well. That's right. Our first poop in the tub! I knew it was only a matter of time... In fact, I might have been sad if Skylar had passed away without ever doing that. It was one of those things that I knew wasn't going to be an easy clean up because we can't just stand her up out of the mess and hose her down, but it's just one of those "mom" moments to experience. Our girl is getting so big!!!


We had our first consultation from the company who will be providing the trilogy just to make sure we don't have a hazardous house and have working outlets. It's was actually pretty funny, but I'll spare you the details because I think you had to be there. We're hoping the paperwork goes through smoothly and we can get approved for the Trilogy (our new bi-pap) soon. Then we can get checked into the hospital to make sure all the settings are right and will hopefully be much more mobile with Skylar. 

Skylar is way ahead of her parents with technology, yet again. Skylar got a super awesome iPad last year, while Kyle and I still have old school flip phones. Kyle and I have a big square box of a tv that was the first "flatscreen" as far as the screen technology goes yet it weighs 100 pounds and is huge even though it was super cool when I first got it. There's a built in DVD and VHS player - do you even remember those? It works and so we can't justify getting rid of it. Anyway, Skylar got her first TV last week - a super sleek LED 22" HD flatscreen with a built in DVD player :) The mini travel DVD player that we used daily to watch movies from her bed finally quit on us and we decided it was worth the investment to upgrade for Skylar and our daily enjoyment of movies. It's amazing!!! Worth every penny! In the few days we were without one, we moved to the living room because Skylar would have her little meltdowns until we were watching movies. At least she knows what she likes! See the new mounted tv below!


You can see that I also updated her room with some wall decals (a present for Skylar's birthday) that I actually put on the plain white doors in the room. It has added so much more color! I hope Skylar enjoys looking at the new things in her room. We're always looking for creative ways to change things up and keep her attention. 

The first Extreme Makeover location for the season was announced - it'll be in Pennsylvania. Still hoping they bring that bus to Atlanta... Maybe they'll keep the same trend as last season and start in the northeast and move on down the coast... Not losing hope. 

Anyway, don't forget to leave a comment if you're interested in ordering a Skylar Project t-shirt. We're still working with vendors, but we'll need to give them an estimate of how many to print for the first round. Thanks! 

Hope you're staying cool in the summer heat. Peace.

Monday, May 23, 2011

The Skylar Project!!!

The reveal of our new logo and so much more - drumroll please...

The Skylar Project! 

We didn't want to start a foundation, because there are plenty of other foundations already in existence for various SMA support and research, but we did want to join forces in raising awareness and fighting for a cure. The Skylar Project was born. Website will be coming soon...


It all started with our friend, Ernesto. He came over to our house one day and said he had a t-shirt designer create a t-shirt to be sold in some of the stores he sells to and called it The Skylar Project. On the inside, where you typically see the size printed, there was a paragraph about our family and SMA. On the back, at the top, there was a logo for "The Skylar Project" done by his designer. It was different than what you see above, but the logo was the start of our inspiration.

The Skylar Project. I loved it! Raising awareness for SMA and supporting SMA research through foundations already in existence. What could be our first "project?"

Our best friend, Austin (the guy on the news clip with us), let us know that he and some of his friends wanted to run for Skylar. We chose a race (supporting Kate's Club - an organization that supports children who have lost parents or siblings) and decided to get a team together to run. We thought we could raise awareness for SMA if we all wore t-shirts during the race. In the near future, we hope to have a 5K/10K run where the registration money would go straight to SMA, but this was a test run to figure out how things work. Below is Team Skylar - missing a few people after the race, but what a great showing!!!


The race was this past Saturday in Grant Park. It was a beautiful venue, however, the course was packed with hills! Over 20 people showed up to run for Skylar and it was amazing! There were a handful of people I had never even met before! Four guys drove down from NC to run (see below) - including our friend Scott (who helped design the logo and ran the whole 10K as gumby), his roommate Ryan (aka Captain America) who we met once before, and two of their guy friends we had never met until this weekend. Some of Austin's friends from church joined us and it was just so awesome to see people I didn't know wearing The Skylar Project jerseys. Tessa, our awesome photographer came, my mom and a few of her friends, our neighbors and friends joined us as well. My friend from church, Corrie, ran the 2K with me and her two girls ran with us, or should I say ahead of us, the whole time... It was great! THANK YOU SO MUCH to everyone who came out to support us. It was so wonderful to see you!


The jerseys were a special deal for those who ran, but if you are interested in getting a t-shirt with The Skylar Project, please post a comment and let us know! I am hoping to have two different color options - a charcoal t-shirt like the image above and then a purple shirt with a lavender and white logo so write what size you would like (and what color if you have a preference). We are just getting an idea how many we would need to print - this is not an actual order. That will hopefully come soon! I am guessing they'll be around $20 or $25 per shirt. I hope to have youth sizes too, but that will depend on the vendor. 

Thanks for reading - my next post will hopefully have recent pics of Skylar :) Peace.

Thursday, May 19, 2011

1 & 1/2 YEARS OLD!!!

Wow - we are halfway there to beating the major odds - a second year with Skylar! It's incredible to have a year and a half with our little girl! We have a 10% chance of making it to November 19th with Skylar and we're hoping to see that day and celebrate it big time! We've been pretty stable these days and are just in a period of waiting. As far as Skylar goes, we're waiting for next month when we can get the trilogy (and check into the hospital), we're waiting to see if Extreme Makeover will bring that bus to Atlanta (we still haven't given up hope), we are still waiting for Skylar's teeth and we're waiting to switch all of her equipment again once we get the trilogy and fight for some more back-up equipment. As for friends and family, we're waiting for updates on baby Joshua, waiting for news about my step-Grandma in FL who is pretty ill right now, and in general, waiting to see what God does in our lives and those around us. Even though we're waiting, we're still living!

This past weekend, I had an amazing day Saturday! I was able to drive to Knoxville, TN for the day to hang out with the Gooden Family! That's right, I got to spend the day with sweet Nora Gooden who is the most precious little girl next to Skylar of course. I can't even begin to describe how much love I have for her and for her family. You may recall seeing Nora in pictures on my blog meeting Skylar last year when they came to the GA Aquarium and stopped by to visit. Anyway, I made it up there around lunch time and got to play with Nora for a few hours. She is so expressive and fun to be with - I helped her launch little plastic monkeys into a plastic tree for hours until it was her nap time. I loved seeing her so excited and proud of herself! Later, we went for a walk, played with bubbles, watched cartoons and just had fun. I hijacked her iPad so I could see all of the great apps they have found for Nora since we're always looking for new fun things for Skylar. I was able to get her to smile and laugh by tickling her with my hair - it was so cute!


As I was sitting outside with the adults for lunch, TJ said, "tut tut, looks like rain" very casually and I looked at him with a smile and asked, "did you just quote Whinnie the Pooh?!" It cracked me up! Later, they quoted a few other movies perfectly, without hesitation, in normal conversation. I thought Kyle and I were the only ones who brought animated movies to life in casual talk so it was really fun to hear someone else do it and be able to appreciate it :) Tj and Jamie are such a fun couple - I wish we all lived closer together, but the three-hour drive was totally do-able so hopefully we can do it again! They are so full of love for each other and are extremely strong individuals - very inspiring.

So that evening was a creative SMA fundraising event through "Sips-n-Strokes" where we had a lesson in painting (my excuse for going up there). I have always wanted to paint, but haven't had the time or confidence to do so on my own so it was nice to have a guide and other people in the same boat who have never held a brush. We each got our own canvas and we were all going to paint the same design - a whimsical tree, aka the GoodenTree! It was funny because I can't paint abstract things very well - especially when you start with a blue sky and a brown tree and then ask me to paint the "grass" like a sunset. It was actually pretty hilarious - Jaime, Nurse Kim (Nora's Nurse who put on the fundraiser), her fiance' and I all had some good laughs. Jaime was a natural and all the "teachers" kept asking her if she's painted before and commented on how amazing her painting was... I don't know why they didn't ask me that, hahahaha. I had so much fun and it was a nice change to hang out with other people who truly understand SMA, what you go through daily, your emotions, etc. You can see Jaime's picture on the left of mine :) That is what it was "supposed" to look like - hahaha - lots of fun! Next time, I'll have to start with a purple sky, then a green tree and sunset grass...


This is me free-handing because I can't paint very well straight up and down on a vertical canvas... LOL. Like I said before, we were all very entertained the whole evening!


I enjoyed it so much that I am going to try to host one myself here in GA to raise money for SMA research! The Walk-n-roll that was supposed to happen in June has been postponed for a few months, so I think I might try having the Sips-n-Strokes in June or mid-July. I'll keep you posted! In the meantime, I am trying to get through my Nora withdraws... I am so ready to go back up and see her and the Goodens again!!! Below is Nora's Mom (Jaime), Nurse Kim in the middle, and me on the right... Thanks Nurse Kim for all you do! To see more pictures and to stay updated with Nora and the Gooden Family, please visit www.Goodentree.com


This Saturday is the 10K (and 2K) for Skylar! Everyone there will be the first to view our awesome new logo and theme for Skylar and our goal to raise awareness. Next week, I hope to post pictures and the logo for all to see. If you feel left out and don't want to run in order to get a "Skylar Shirt", we hope to sell them to raise money for SMA as well :) Lots of stuff coming up so stay tuned. I'm trying to update more frequently, lol. Peace.

Friday, May 13, 2011

Heavy Shoulders, Happy Hearts

As much as we've had happy hearts during this time of celebration and Easter, we've also had some tragic things happen as well that have just made us feel heavy.

Not too long after Easter, the wicked storms passed through AL and the rest of the southeast. We saw the footage of a massive tornado just south of the University of AL. Kyle, having been to our friends' place there, saw the location and knew our friends had to be in trouble. After calling, texting and checking facebook, we learned that they were okay. However, their house had been hit and their roof was pretty much gone. The pictures that followed were rough. It looked as if some giant had come by, ripped the roof off their house and picked it up and shook it all around before putting it back down. We are so thankful they survived, but are so sad for those who weren't so fortunate. Our church is taking donations on Sundays in the atrium and you can see more of what the Christian Service Mission needs to give out - toiletries, blankets, towels, baby stuff, batteries, flashlights, etc. on their facebook page.

This storm was a wake-up call to us as well because we didn't really have a tornado plan of action. We can't just grab Skylar and run into the bathroom and curl up in the tub. If a tornado comes through, the power is definitely going out. Then, stuff will be flying, tossed around, etc. outside of the house. The night the storms came through, just after Easter (Kyle had just gotten home), we pulled the generator in the back room so that it wouldn't get knocked over or blown away. We set up the back-up bi-pap in the bathroom and made a game plan of what each of us would be responsible for in the event a tornado came through. It was scary. Thankfully, the most severe storms split around us and we just had the power flicker a little and didn't have to act out our plan.

The next week, our neighbors down the street had a baby. They had a great pregnancy, an active labor with the baby moving constantly, however, as soon as the baby came out, he was not breathing. After testing, they said he had a condition called HIE (hypoxic ischemic encephalopathy) and he was life-flighted to Northside hospital due to his lack of oxygen. They did a procedure to lower his body temp in hopes of the brain being able to repair itself. The baby was intubated and put on a ventilator during this process. When they warmed him up after 72 hours or so, there was still no activity. They had decided to let him go, but before they did, I had the privilege of taking pictures of their precious little boy and of family members as they said their last words to him. He was a huge newborn and giant of the NICU at 9lbs 6 oz and over 21 inches long! It was truly an amazing honor to be able to be a part of their son's life and to be able to use my talents to give back to a family just like Tessa has done for our family.

Kyle and I were both able to go to his memorial service at our church this past Saturday. We never thought we would be going to another child's memorial before we had one for Skylar. It was a very sad day, but as Christians, it wasn't without hope. Sure there was grief, sadness for the parents and family, anger that this tragedy had to happen, but we have hope that he is in Heaven. There is a cause to celebrate because death is not the end for us. I was encouraged from just reading the book, Heaven is For Real, which helped me picture what Heaven might be like instead of some far off place in puffy clouds. Even though we have not had to bury our own child just yet, we've had to make some of the preparations and have long been mourning the loss of our "normal" parenthood and what is to come, so we've been happy to talk to them. It's been great to share in different emotions and also learn from them. They are amazing people and we look forward to continuing our friendship with them. Another great piece of their story is that their son was able to save the life of a one month old baby girl through the donation of his heart! What an amazing miracle and Mother's Day gift for that family!!!

We also found out that our best friends who are expecting their second boy (20 weeks along) have discovered their baby, Joshua, has a bump on his head called an encephalocele. An encephalocele (in-sef-a-luh-seal) is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain can protrude into a sac-like formation, or "bump". The really crappy thing about this is they just have to wait as the baby grows to see how this bump behaves. Obviously, the smaller the better, and surgery is most definitely an option, but only time will tell. The waiting and not knowing can be torturous so please pray for this family if you feel led to do so.

Saturday night, our nurse came over to "babysit" while Kyle and I were able to go to a first showing of a documentary from an organization called Give Us Names. A good friend of ours from college and his roommates have been working on this project for sometime. They've been searching for a way to help all of the injustice they've seen throughout various mission trips and other adventures. Columbia has been their primary focus - finding a way to bring awareness and help to the farmers who have been displaced. You'd think their displacement is from the wars and violence, but it's actually due to the careless fumigations that the US has been doing for years in a lame attempt to control the growth of the cocoa plant that cocaine is made from. It was a great film and very inspiring. They are looking to do showings on a "home tour" where you can host 15-25 people at your house to watch the film together and ask questions about the organization. There will be more large scale viewings in the future. If you're interested, check out their website and how you can be involved!

Mother's Day. It was simply amazing. After I had gotten home from taking pictures in the NICU Thursday, needless to say, my eyes were red and puffy from the tears that fell on the way home. When I walked in the door, Nurse Natalie said I had a delivery of flowers. I walked into the room to find an amazing huge tropical display that could only be from my Dad and Sandy. It was the perfect pick-me-up. The next day, I went through the pictures I had taken of the family and little boy to edit for the memorial and found some more tears to shed. My mother-in-law dropped off a geranium on my front porch in a beautiful lavender color which was another great way to lift my spirits. Sunday, Kyle went to the afternoon service while I stayed home to get ready for the day and get Skylar ready for a bath. My mom dropped by with a cute little planter that is so lovely on our front porch table. Kyle and I were able to bathe Skylar together and as we finished, a news crew showed up at our house! A friend came over to be interviewed and brought me the most beautiful lavender orchids!!! After all, Skylar is my little orchid. Kyle's present to me was a painting of flowers done by a friend of ours from college and he did an amazing job of making me feel loved and appreciated. I've been so spoiled this year and felt very loved by many! Thank you!!!

CBS Atlanta did a sweet story on the 10K For Skylar and our family in general. It was a great Mother's Day gift and aired that night at 11pm (and supposedly the next morning). I was so happy to get some news coverage to raise awareness for SMA. If you're interested, you can watch the video here. ***If you're running the race, please make sure you register online on the official race website, but also fill out the contact form so we know who is on "Team Skylar" and include your shirt size so you can get a special jersey. If you can't run, but want to get involved, hold onto your money because we're hoping to sell the shirts with our special Skylar logo to be revealed after the race. The runners get the sneak peek :)

I also found out that I was the winner of the Gwendolyn Strong Foundation Mother's Day contest and won a ton of goodies that I am looking forward to getting! Pictures will be posted as soon as I get the package since there are things for Skylar in there as well - super excited! Not as cool as Nurse Natalie though who found $10 in a wal-mart parking lot, turned around and bought a lottery ticket with it and won $10,000!!! CRAZY!!! Too bad 31% went to taxes...

For all of you Mothers out there who have lost children, my heart goes out to you. I know Mother's day can't be easy for you and I dread the day I no longer have my little girl to celebrate with me. I have prayed for you and hope you can find peace and reason to celebrate.

In other news, we had our first office visit with Dr. Brooks (pulmonologist) this week. It was AMAZING!!! I could not believe the difference in care we received and the support we felt. It's so nice to have someone in your corner ready to fight with you. We are just so grateful for our new doctor and are excited and hopeful for the care we'll get. We've had some drama with the Trilogy bi-pap I mentioned before. Apria, who told me they could get the machine no problem, has since gone back on their word and was just horrible to deal with. The good news is that after calling a bunch of different providers, Hi-Tech (who just services adults) was able to refer me to PSA who is going to work with our doctor to get us the trilogy! They've been fabulous! It should take 4 weeks and we'll have to check in the hospital overnight to get it, but it should be worth it!

As you can see, we've been overwhelmed with recent events. Skylar has been stable and pretty happy. We're working on her diet and equipment over the next month. Stay tuned. My goal is to post another update after the weekend - short and sweet with pictures :) Peace.