Friday, August 20, 2010

Happy 9 Months Skylar!!!

Today, August 19th, we celebrated Skylar's 9 month birthday and it was a good day. We had some friends come visit for lunch (a friend of mine and her almost 3 year old) which Skylar loved! We also got the good news that we are finally getting approved for the in-home nursing care :) the paperwork took forever to get through doctor's offices, the nursing company, then insurance, but I will soon have a set of extra hands around during the week to help me which I am really looking forward to. We got to meet the nurse today, and she seems really great. She has worked with a lot of trach patients and other severely handicapped kids, but never an SMA baby before so hopefully we can get her up to speed fast. Medicaid is a whole other story... I don't know if we'll ever get that in Skylar's lifetime.

A lot of people have been asking, and I wish I had something good to tell you, but no updates on the extreme makeover yet - I think it takes at least a month for them to even get to the application (I have to think they get hundreds a day) but if I hear anything I will definitely post about it!!! We're still trying to get support by people "liking" our fan page on facebook and making any connections that could possibly help us get chosen (for example, a manager of a chick-fil-a writing a letter to the show letting them know that they would supply food to the volunteers, the Clemson football coach calling ABC to put in a good word for us, etc.)!

So it's been a rough week for me... Skylar struggled while I was gone at a wedding this past Saturday and had a recovery day Sunday. By that, I mean she wasn't full out struggling, but she was working hard to breathe and wasn't really happy. Then I found out about my friend who lost her little girl, Annie, and I was an emotional mess (see last blog post, lol). The week started with a few okay days leading up to today - no major scares, but hardly any smiles either. Maybe that's because I didn't have any smiles either... Emotionally, I was really struggling thinking about losing Skylar, what that would look like - her death, funeral, burial, etc. and I almost couldn't function (it didn't help that my hormones were crazy too). After talking to Annie's mom a few times, it all became very real for me, and it was really good to talk to her. I had a few good cries with some of my friends over the phone and with Kyle at home, however, I have to go back to the daily mindset of not allowing myself to focus on what could happen and instead, just take one day at a time. I lost sight of that and it's amazing to me how powerful the mind can be. I have inspirational quotes on my google home page and this is the one for today, I thought it was very fitting:

"The first requisite of success is the ability to apply your physical and mental energies to one problem without growing weary." - Thomas Edison

I was thankful for a few smiles today and happy we made it to the living room! We had been staying in the nursery all day the past few days because I was afraid to move her away from her machines... It's a lot of work to carry her and the pulse ox machine, then another trip to transfer the suction machine and feeding pump/IV pole, then another trip for any blankets and toys we might want to take with us or diapers and wipes and other supplies only to move it all back again since her cough assist stays in the nursery. Today, I brought the cough assist machine up to the living room with us because I knew we both needed to get out of the nursery. I would be more willing to move that thing around if it wasn't an awkward shape and ridiculously heavy. It was nice to move around today - we watched some movies today on our "big" tv in the living room (as opposed to the little portable dvd player we have in her nursery) and Skylar got to watch Lucy (the little girl who came over today). They had fun playing peek-a-boo, watching Finding Nemo, and playing with other toys! I'll post a few pictures soon - I know it's been a while!!!

As it is still SMA Awareness Month, our newly formed GA chapter of Families of SMA is working on becoming "official" with a post office box, phone number, and website. As Vice President, I am hopefully going to get the website up and running soon and will post a link when it's ready. I've also been helping Annie's mom with some graphic design work to raise awareness in KY and have a little something to remember Annie by... Here's the business card front that I've worked on for them and their story is written on the back of it:

I really loved that Annie's mom requested a pink daisy to be a part of her "logo" and was so excited to be able to give something back to them to have as a memory and pass out to people to raise awareness. I had so much fun coming up with Skylar's "logo" of orchids and it was an honor to be able to create something for Annie. I feel like Annie looks like she could be Skylar's relative of some sort. Nora is another little girl with type 1 who looks very similar - maybe that's why those girls and their families have a special place in my heart...

I am so glad that my talents in graphic design and photography can be used to help the SMA community and people in my life. It feels great to be doing something that you love to benefit others. I only wish that everyone could do the thing that they love and not have to worry about money and paying the bills - my husband included. He's been working extra hard lately with a few unexpected changes in his department and I am just so thankful for him, his job, and the love he has for us! Because of that, I am able to stay home with Skylar and do graphic design and photography even if I don't make any money with it :)

I know a lot of friends have told me that they were thinking about our family a lot this past week. There was definitely a reason so thank you for the prayers, the words of encouragement, meals, and love you've given us. We're grateful beyond words for the way everyone's supported us through this time in our lives and only hope to be able to pay it forward or give it back if there is a need and we're able to meet it. Have a great rest of the week! Peace.

Tuesday, August 10, 2010

SMA Awareness Month

Wow. I am sitting here with tears flowing down my checks, snot soaked into my t-shirt sleeves and a very heavy heart for a dear friend who lost her little girl to SMA type 1 Friday night. I just found out. I can't imagine what their family is going through after reading the story, even though I know it's going to be in our future some day... Another reason why I am crying. Their little Annie was 9 months old. Skylar will hit that mark in 9 days.

In the past few months, Annie's mother and I have talked on the phone together, cried together, shared stories, exchanged ideas on how to play with our girls and just wondered why this horrible disease exists... We've talked about our daughter's deaths, purpose in life, and complete healing in Heaven (as we are both Christians). We dream about the day we'll get to have their little arms wrap around our necks and have them call out "mommy."

I've realized more and more that everyone dies from their body failing them... whether it be SMA and never fully functioning the way it should, from a severe wound that can not be healed, a horrific disease that attacks the body internally like cancer or just pure exhaustion after a full and complete life. Looking around at all of the people living around me with this reality in the forefront of my mind begs the question, "why are we here? what is the purpose?"

I just recently read an interview by the author of The Purpose Driven Life (his wife has been battling cancer this past year and it seems as though she's not expected to make it through). His words sum up all that has been on my mind, but much more eloquently, so I thought I would pass them on...

"In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven... I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity. We were made by God and for God, and until you figure that out, life isn't going to make sense...

Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one. The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy. We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness. This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer. I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore. Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life...

No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for. You can focus on your purposes, or you can focus on your problems: If you focus on your problems, you're going into self centeredness, which is 'my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others."

So to give you a quick update, our splint appointment went well and we should get our new splints by the end of the month... we have some temporary mitt splints for her wrists and hands that are pretty adorable as far as splints go :) She did really well traveling and I think she's starting to get used to our routine and doesn't stress out as much, which is awesome! Skylar has had a great week and we are so thankful for no serious drops and "easy" days! No update on the extreme makeover front, but make sure to tell your friends to "like" our page to show that we have support (there's a link on the upper right hand corner of the blog). Thanks for your support with that and the other areas of our lives as well... we get our strength from God for sure, but those of you who are a part of our lives (through friendship, prayer, donations, gifts, cards, food, etc.) have helped us endure this with lighter shoulders despite the heavy burden resting on us.

So my last little bit here is to let you know that this is SMA Awareness month and we've officially started the GA Chapter of Families of SMA (FSMA) with our first meeting last week. It was so great to meet people - especially Sherry Manross (the mother of Rich Manross whose family donated the stroller and other supplies to us). Rio, a young woman who has a type 2 little boy, is President, I am VP, Casey (an aunt to an SMA boy) is Treasurer, and Sherry is Secretary. I am so excited about this and providing encouragement and support to all newly diagnosed families here in GA. Stay tuned for updates!

Spread the word about SMA and lets get funding for a cure!!! Peace.

Sunday, August 1, 2010


I want to share with you some amazing things happening lately:

Thank you to all of you who voted in the Pepsi Refresh contest for Sophia's Cure - we finally made it to first place and got $250,000 worth of funding towards SMA research!!! Simply AMAZING! With many clicks on a simple "vote" button, we were able to raise a quarter of a million dollars... something that would've taken many fundraisers and lots more effort and time, so THANK YOU!

Some other awesome news in the SMA world.... I finally have enough people on board to start a Families of SMA chapter here in Georgia!!! AMAZING! I've been trying to start one for months now, but it's been hard to find enough people who want to take on the responsibility and I don't have the time to devote to being President, or I totally would (plus you need at least three other officers to start and run the chapter). We're having our first "get-to-know-you" meeting in a few days and I am really excited to meet a handful of people who share the same vision as I do... It's crazy to think we have so many resources here (Children's Healthcare of Atlanta as well as many other great medical offices) and no chapter to help newly diagnosed families. I am really looking forward to being able to help future families and hopefully provide a resource and a place to turn when their world comes crashing down like ours did...

More SMA stuff: I just finished designing a poster for the Hope and Light Foundation here in Atlanta (a foundation dedicated to raising money for SMA research) for an upcoming fundraiser. If you are wanting a night out on the town and you live in Atlanta, consider going to one of the participating restaurants in the Virginia Highlands for dinner Monday, August 9th from 6-10pm. Restaurants include Everybody's Pizza (VA High. location only), Atkins Park Tavern, George's Bar & Restaurant, Fontaine's Oyster House, Highland Tap, and Skips' (in Avondale Estates)... Ten percent of your bill will go back to the H&L Foundation.

In other news, Skylar had an appointment with the GI doctor to go over her upper GI results and to discuss long term plans. We found out that the reason her belly is so small is that because they had to use a lot of it in order to do the fundoplication procedure. I didn't even think about how much they used to wrap her stomach around her esophagus and stitch it... so it makes sense that her tummy would be extremely small, but we still never would've guessed it could only hold an ounce at a time. Since my last post, her feedings have been going much better. The continuous during the day have helped relieve a lot of stress - Skylar's average heart rate has gone down some since the switch and she just seems more comfortable. Overall, the GI doc was really pleased and said to keep doing what we're doing.

We had an appointment to get her ankle splints - they messed up scheduling us and then the person who did the splints didn't make them correctly so we're going back this week to get them re-done. The good news is that they've been super great about working with us to squeeze us in and make-up for their mistakes. Our physical therapist is going to write out a detailed explanation for me to give to them so hopefully they'll be done correctly this time :) Skylar's feet are really starting to curl in and her legs aren't growing straight. Her knees are angled in so that if she tried to stand, she would be bow-legged. We're just going to focus on her ankles/feet and wrists right now since that is what she is able to move, but may need some wisdom with proceeding any further with her legs and body alignment.

Skylar's been off and on with good days and bad... Some days she struggles and other days she's fine and happy. There's no rhyme or reason to it (at least that we can figure out) and so we're doing what we always do... just taking it a day at a time and thanking God for every day we have together as a family.

I have to share one more thing... Sorry this is a long one! I have been supporting a boy in India for at least 5 years now, maybe more. He calls me "Aunt" and it's just been a really neat relationship and a blessing. We exchange letters and I will send him extra money for holidays and his birthday and it's really fun to hear how he and his family was able to use it. One time he wrote me back so excited because they were able to get a chair - they had never had a chair in their home before. Stuff like that always amazes me and makes me stop and think... and be thankful for what we have... and sometimes wish life were more simple. Anyway, back to the point :) I wrote him a letter explaining what we were going through with Skylar and I got this letter last week:

"I received your letter. I became so sad to read your letter. I and my family members are praying for my younger sister Skylar. Surely God will cure my sister Skylar. In my project every second Saturday a prayer meeting is arranged. All children and staff together prayed for my sister Skylar. I hope that surely God will cure my sister. Nothing is impossible for God. We are continously praying for Skylar Aunt. Don't Worry. Our Almighty God will comfort you."

How amazing is that!? He's in the 11th grade now... if you want to pray for him, his name is Jerin. His letter also informed me that it is the rainy season and many communicable diseases are spreading so he asked for specific prayer for protection and health.

We're continually amazed with the people God has placed in our lives and want to thank everyone for your generosity, prayer, support and love for us. I'll try to post again soon so it's not so long :) Thanks for reading. Peace.