Tuesday, December 28, 2010

Happy Holidays!!!


Happy Holidays!!!

I have to apologize - I am soooo past due for a blog post. I can't believe it's been over a month... So much has been going on. I'll update you soon, but I wanted to do a quick post to wish you all a Merry Christmas and Happy Holiday season. Here's a picture of us "kids" on Christmas. It's been so nice having Uncle Matt around :) Skylar is wearing her special Christmas dress that kinda looks like a lady bug, so we called her our little "Skylar Bug" for the day.

Skylar doesn't look very happy here, but I think it's because we turned her away from the Christmas tree and all the fun decorations... Sorry - no smile from her in this picture. Stay tuned.

May you find joy and peace throughout the holiday season!

Saturday, November 27, 2010

Party Pics!!!

So my little champ survived the power outage and I couldn't be more proud of her. Kyle and I have enjoyed the holiday weekend and hope you have too! We got the pictures from Nicole Grimes that she took at the birthday party so I wanted to share them with you!

The party was held at our church in the auditorium. Trinity has been amazing through everything and this was just one more way our church stepped up to help us out! We put a couch on stage so Skylar could lay on it and be comfy with the ability to look out and see everything.

My friend helped me with signs and banners even though she was sick and missed the party - she left everything on my front porch so she wouldn't even come in contact with us.
Thanks Lindsey!

Here are some postcards I designed with pictures of Skylar and a thank you message on the back that a dear friend printed up for me. The large poster is from the SMA event at the hospital that I just re-used :)

This is a close up of the top of her awesome cake/cup cake tower.

Skylar smiling - this was a rare event at her party because she slept most of the time. What a party pooper, lol. When she did wake up, I think she was a little overwhelmed, but it was still fun!

The Jones Family!
(compliments of my step dad's iPhone :)

These are two very special kiddos dear to my heart! They have both lost siblings to SMA and it was so awesome for them to meet and play together since they are almost the same age. They are two very smart kids and so adorable too! I wish I could have spent more time with them, but hopefully I will get to hang out with them again soon!

These are some of my best buddies from Clemson. One friend drove all the way from NC! She came to my "after baby shower" to meet Skylar when she was only a month and a half old (right before we were diagnosed) so it was cool for her to see Skylar again! This is also the debut of my new bangs and hair color - thank you Ryan at Michael Burton Colors Salon!!!

Hope you enjoyed the pictures - thank you Nicole for staying behind the camera for us :)

I know you are all probably spoiled now with three blog posts over the holiday weekend, but I can't promise another one any time soon, lol. I am working on some design projects and photo editing so that will be my focus for the next week or so. Stay warm!!!
Peace.

Friday, November 26, 2010

Thank God For Nurse Natalie!

So today we had our first "emergency" situation... The power randomly went out and it was one of the worst case scenarios - Skylar was on bi-pap. Some of you may not understand how this could be a "worst case" but let me try to explain...

Skylar's bi-pap is a machine that adds pressure to her breaths so she can fully expand her lungs and get the air that she needs. There is no oxygen added - just room air - but it does have a back up rate in case she were to quit breathing like a ventilator. It is non-invasive so she wears a little triangle mask over her nose only (it doesn't cover her mouth at all). There are pictures of it in the last two blog posts I think... The bi-pap allows her body to take a break since she's not breathing so hard to get the oxygen she needs - her heart rate is typically lower, which is good, and she gets great sleep too. We also get great sleep because we know she is resting well and doesn't need constant suctioning since a lot of the mucous is pushed out her mouth from the high pressure. Some mucous, however, can get into her lungs - which is why we do a cough assist treatment every time we take her off bi-pap. The absolute worst case scenario would be that the power would be out first thing in the morning because she has sooooooo much mucous built up from the night and it gets really thick - it would definitely require the cough assist to clear her airways.

So hopefully that helps you understand some. Skylar was on her bi-pap for a nap and I was on SMAspace replying to some discussions about mucous plugs and calling 911. I realized I told Natalie that we're the first people to call in an emergency if no one else is around (not that I plan on leaving her alone, but just in case...) and not to call 911 before she talks to us. So after answering some discussions, I went back to correct myself with Natalie. I told her that if the power were to go out and she was alone, that would be the only case in which she would call 911 first before us. I told her that we have been meaning to get the right cables to hook up the battery and inverter in the van, but wanted to make sure the van could handle the power drain and it wasn't going to hurt anything since it's not technically our van... needless to say, we still need to get the cables. We haven't gotten a generator because the van would serve as the back-up power, but not so much anymore. She asked me what we would do and I told her we would pack up the bi-pap and suction machine and hang out in the van as long as we could. We don't have any external power ready yet for the cough assist (it requires a pure sine wave - I can't explain it so I'm not going to try). We have a small inverter that you would typically use for a laptop - or something like that - which we use for the bi-pap and then the suction machine has a cigarette adapter made for it. I then told her word for word, "Knock on wood, our neighbor told us they've only had 2 power outages in the 10 years that they've lived here so hopefully we will never have to experience that."

Not five minutes later, Skylar woke up from her nap at 3:20 this afternoon. I was in the kitchen cleaning my plate and I heard this horrible beeping sound. My first thought was "that sounds like the low battery beep on her feeding machine, but it's slightly different and I know the feeding pump is plugged in." Then I thought, "please let that be nurse Natalie's phone or some alarm of hers..." So I ran back to the nursery and I went to the feeding pump, but the beeping was coming from the other side of the room. Oh Lord. That's the alarm on the bi-pap to let me know that the power is out and it's no longer working. I frantically looked at her feeding pump and saw that it was running on battery. I looked over to the pulse-ox machine - it too is on battery power. My first instinct was to take her mask off and run a cough assist to clear her airways... oh wait, the cough assist doesn't work!!! PANIC!

With her mask on and no air coming in, she can't breathe and is probably panicked herself. I pulled her mask off, ran to the front of the house to get her portable suction machine and ran back to her room and suctioned her out. I cleared as much as I could out of her nose and throat (since the bi-pap creates thick secretions and boogers) but didn't want to use too much power because the battery life is pretty short on the suction machine. I knew that I needed to get her to the van if the power stayed out. I called all our neighbors to find out if it's just our house or area-wide. No one answered. Of course, it's the day after Thanksgiving... I finally got on the phone with GA Power and found out it's an area-wide outage and there is a crew working to fix it. After getting off the phone, I heard sirens and more sirens so I guessed it was an accident that knocked out the power. They told me it wouldn't be more than an hour. Could we make it that long?!

I was running around like a chicken with my head cut off. I ran and got the stroller, picked Skylar up without even thinking about all of her cords attached to her and put her in her seat. Meanwhile, Natalie was trying to unhook her feeding pump tube, grab her pulse-ox machine (attached to her big toe and was pulling across the room) and get her bi-pap machine to the van. Natalie was a rock star. We were out the door in a few minutes - Skylar was stable for the first minute, but then was looking a little pale as she was needing a cough assist. The area around her mouth always turns blue first and definitely changed colors fast. Like a crazy woman, I threw a blanket on her and wheeled her out of the house. Natalie helped me get her stroller down the step out our back door and then helped me lift her into the van in her stroller. THANK GOD FOR NURSE NATALIE!!! I would've probably been a nervous wreck if she weren't there to help me get everything together. Kyle wasn't even close to home and I could not have been able to carry everything in addition to caring for Skylar!

As soon as we got in the van, got her bi-pap back on, Skylar was fine. In fact, she looked at me like, "Why the heck are we just sitting in our driveway? Shouldn't we be going somewhere? This is boring..." It was pretty funny. Natalie went back in to finish cleaning for the day since it was right before she was supposed to leave and then brought the iPad back out for Skylar. We watched/read a few stories to pass the time. I called Kyle's parents to see if they would come down in case Natalie had to leave and I was stuck in the van, lol. Seriously though, I can't lift her stroller by myself so they headed down. Our power came back on (GA Power called me when it was restored) and I think from power out to power back on was a full hour. As Mom & Dad Jones arrived they said they saw the emergency vehicles on the corner of our neighborhood, which would explain it.

I think this whole thing caught me so off guard because there was no storm, no ice, no fallen trees... nothing that would normally happen to knock power out. In the fall, we had some really wicked storms and I told Kyle then that we needed to get a generator. When a storm would come, I would have a plan and was almost expecting it. This was out of the blue and shocking really - especially since I had gone over everything just minutes before with Natalie. It's her second day in our household and I am pretty sure she thinks I am a crazy lady now, hahaha. I can't help but think that God had something to do with the timing of it all though :)

Well I just had to share this crazy day with you - if for no other reason than to document it for myself to look back on and laugh about. Needless to say we'll be buying a generator. Thanks for reading. My next post will contain birthday pictures... promise!

Thursday, November 25, 2010

Birthday Celebrations!

HAPPY THANKSGIVING!
I hope you all are enjoying good food with family and/or friends and have a holiday season full of love and laughter!

I am super thankful our little girl is still around to celebrate and that I have a loving husband to go through this with as we grow together. We are so grateful for all of the support we have - an amazing family and network of friends! Thanks!!!

Sorry for the delay with this post - I was trying to get pictures together and had a few other set backs, but here is the birthday update :)

On Skylar's Birthday, which was Friday, November 19th, I was so excited that we were able to celebrate together! Skylar woke up in a good mood, full of smiles (I think she knew it was her birthday :) and I was full of joy. I got to see my little girl turn 1!!!


Skylar had a great day! Our CNA came to help me bathe her, we watched all of her favorite movies and she had a really good nap. We were going to take family portraits, but our photographer had to cancel because she was feeling a little under the weather and we didn't want to risk it. Hopefully we can reschedule soon. I think I felt every emotion possible - anger (thank you Reese), excitement, disappointment (people having to cancel coming to the party because of illness), thankfulness (people not coming to spread their germs to us), love, joy, peace, anxious/worry (party and germ exposure) and sadness/suffering...

When Skylar was napping, I decided to get online and check facebook only to be shocked with the news that a 2-year old little boy named Jonas with SMA type 1 had passed away the night before. He had been fighting with a cold for a week and wasn't doing well, but I just didn't expect to see that news. Please keep the Coleman family in your prayers as they grieve the loss of their son and continue to raise their new baby girl who also has SMA type 1. I was so mixed with emotions - extreme sadness for this family and a reality check for us, but I still wanted to be happy to celebrate Skylar's birthday. I had a good cry and then decided not to think about it much more so I could be happy for Skylar.

I was telling a few people that to live "normally" and function daily, I almost have to live in denial that my daughter is going to die soon. If I focused on that, I would be depressed and a constant mess. I have to force myself to let that go, knowing I will have plenty of time to go there when she's gone. I choose to celebrate every day with her while she's here. So when I hear about another SMA child passing away, it's a harsh reality check and sends me into the grieving process, not only for that family's loss, but knowing that will be me someday as well.

Anyway, I was able to get through it because my wonderful husband went out and bought lots of goodies including stuff to make a cake and was in the kitchen baking when I learned about Jonas. He came and gave me a hug and then I joined him in the kitchen to continue with the birthday celebrations. Once her cake was done, we took it into her room to show her. We want to recognize all of our friends who make awesome cakes - it's a lot harder than it looks, but Daddy did a good job!

I gave Skylar got a nice gum massage to help those teeth break through and we hung out as a family just enjoying the evening. I stayed up until the wee hours of the morning to put together a video of Skylar over the past year, but every program I tried to use had different issues and I decided to go to bed frustrated and grumpy with nothing to show. Oh well - hopefully I can get something together for the blog soon.

Saturday was a big day. We got up super early (Kyle woke me up much earlier than my alarm was set for) but it backfired on him because then I took my sweet time thinking I had extra time to spare, lol. So we were running late as usual and ended up running out the door to go to the party without my camera! Luckily, a few people brought cameras and are going to send me pictures so stay tuned for actual party pics. We arrived right at 11:30 and it was everything I imagined in my head! I had given my moms all the responsibilities and they did a great job!!! My stepmom was in charge of the cake/cupcake tower which was complete with little white orchids and butterflies, and my mom & mom-in-law did the balloons and decorations - AMAZING! Thanks moms - couldn't have done it without you!

Many people at the party were surprised how long and "big" she's gotten so I wanted to post a full length picture for you to see since I realized I typically do close ups of her face. Here's her special birthday dress I had so much fun buying for her :)

We were sad a lot of people canceled last minute due to not feeling well or kids being sick, but we were grateful that the germs stayed home and Skylar seems to be feeling just fine :) A lot of people did make it to the party, including the doctor that delivered Skylar!!! It was so neat to have people from all walks of our lives come out and celebrate Skylar - high school and college friends, SMA buddies, church friends, medical professionals, family friends, etc. Thank you for supporting us and for coming out to celebrate! Even though Skylar was a party pooper and slept through most of her party, I think she enjoyed the change of scenery! She has already enjoyed a lot of her gifts too :) I did not expect so many gifts since we did a potluck, but we got a ton of fun books, puppets, toys, clothes, gift cards and more! THANK YOU!!! Even the wrapping/packaging was amazing! Here are all the cute bags we received -


We were all worn out and Sunday we slept in and had a fabulous day of rest. We brought all of the balloons from the party home and I let them go in her room so they filled the ceiling. The next day, the latex balloons had already fallen to the floor, but the fun shaped balloons are still going strong - Check it out!


We also got to interview a nurse who is now going to be helping me. Tuesday we filled out all of the paperwork for our in-home nursing and it's complete! We have a nurse coming to help me 3 days a week now from 8-4 :) YAY! Tuesday was our first day and it was awesome!!! She cleans out the equipment before she leaves and is around all day to help me bathe her, move her, watch her while I go to the bathroom or take the dog out, etc. This is going to be a huge help, I can tell already! I don't typically ask for specific prayer requests on the blog, but here's one if you're up for it. Our nurse, Natalie, is super qualified medically and is really nice so we hope to keep her around, but she has 4 kids at home (ages 2-12) which is a huge potential to carry illness. Can you please pray that her family stays well and that she would not bring any germs into our house?

More pictures to come!!! Stay tuned for her Thanksgiving dress and birthday party pics!

Wednesday, November 17, 2010

Big News!

Well, I thought I would update you before things get too busy around here and I write another short novel :) A few big things have been going on and it seems as if things are finally coming together... (apologize in advance for any run-on sentences! I am a long-winded person and tend to write that way too according to my husband :)

First: WE HAVE MEDICAID!!! Finally. I almost had a nervous breakdown a few days ago because when I opened the envelope with the letters and her medicaid card, the only eligible dates listed were Oct. 1, 2010 through Oct. 31, 2010. That's right - one month and it is already mid November so what the heck?! I thought, surely, this must be a joke. After talking with a social worker, I was told sometimes medicaid will only give you coverage on a month to month basis. I thought I was going to laugh, cry and hit something all at the same time. I made several phone calls to workers who were conveniently not available to answer my phone calls and also had mailboxes that were full... how nice. We finally got in touch with the supervisor I had talked to several months ago and he assured us that Skylar was covered for a full year. This will hopefully save us from needing to do another fundraiser for our family. It was a nightmare to get medicaid, but I am hoping it will be worth it!

Second: We are waiting on her stroller to come back and should have it today... I still don't have the power supply (battery and inverter) for the stroller, but that's just a matter of figuring out what will work best with our setup and finding it online to buy. Our social worker at hospice is already working with the aquarium to see if we can get out for a special outing with Skylar once we get everything ready and do a test-run at a park or something to give us confidence in going public. It will be an amazing day when Kyle and Skylar and I can get out as a family for fun. The last time we were all out together was when she was a couple months old and was still in her little car bed...


Third: Skylar is about to turn ONE! It is almost unreal for me to think we're going to have a birthday party and she's going to be there to celebrate with us! Doctors never gave us a life expectancy for her, but we saw the statistics online about most SMA babies not making it to their 1st birthday... and if they did, only 20% see their 2nd birthday or something like that. Also, the earlier diagnosed, the more severe so that wasn't looking so good for us either. Right away, I prayed that we would beat the odds and see her 1st birthday. I knew she would be a fighter like her mommy and a survivor like her daddy. The one year birthday was a great milestone to hold onto for hope - a milestone she could actually reach. I am so thankful for a full year with her. It's been such a blessing to see her grow and mature out of the baby stage. Even though she can't move much, let alone crawl or walk, she seems to be more of a "big girl" with her facial expressions, growing length-wise, hair finally growing on her head, but I am still waiting on those teeth to poke through.

It's crazy to think that it has been a year. One year. So much has happened. Sometimes it seems like just yesterday that I brought Skylar home and other times it feels like years have gone by... and every now and then I have to remind myself that this is in fact my life - it's not a dream. It's a tough reality, but one we are able to go through with the support of our friends and family (including our church). We are looking forward to celebrating with everyone this weekend :) I know I said this in my last post, but if you want to come and didn't get an evite, please let me know - I sent it out using email addresses and am afraid I may have left people out without meaning to. If you're someone who was left out, please forgive me and email me so you're not left out anymore!


So I think those are the major updates. Oh yeah... we're still working on the in-home nursing help for me - will update you when that becomes a reality (we're waiting to interview nurses). On a somewhat related note, we were able to get a different approved nursing company to come and give Skylar her RSV shots in-home on a monthly basis so we don't have to go to the doctor's office every month! This is such a huge relief on many levels. When January rolls around and we have to pay out our large deductible, Medicaid should be able to cover the in-home shots which will save us thousands of dollars a month. Not exaggerating. The vaccine is super expensive, which is why most kids don't get it. It's so nice that we can get it in home where it's nice and warm and germ-free for the most part :)

Skylar has been pretty stable the past week. She's had a few episodes where she dropped her O2 levels down into the 60s (I think it was just a bad mucous plug blocking her airway or she aspirated on her saliva and choked pretty badly) but I think she'll be okay. My mom has been a HUGE help this past week and has been over all last week to help me and kyle - from painting and cleaning to bringing food and playing with Skylar... THANKS MOM! Uncle Matt came into town this past weekend too all the way from Maine and it was so fun to see him!!! I know Skylar enjoyed watching Surf's Up with him :)

I am pretty sure she's excited for her party. Skylar will certainly enjoy the change of scenery! She gets a little scared with a lot of people around, so we'll have her away from the crowd where people can visit a few at a time. All the moms (my mom, stepmom and mom-in-law) will be helping set up and decorate for Skylar's party and I am so excited - thanks for your help!!!

Here is Skylar checking out her first birthday gift from Great Aunt Vickie and Uncle Steve in Indiana - I think she liked the shiny paper, hahaha - her eyes are huge :) I helped her open it and we've already enjoyed some of the fun movies inside!


So that's about it. Stay tuned for birthday updates and pictures coming soon!!! Peace.

Thursday, November 4, 2010

Celebrations!

Lots of celebrations going on this month - Kyle and I celebrated three years of marriage yesterday, Skylar is going to have her first year birthday party in 2 weeks, and then Thanksgiving! I love the fall and holidays :) I'll also be speaking at the SMA conference at Children's Hospital next week which is really exciting too!

I just noticed too that I really slacked off last month - one blog post! I'll try to be better :)

So many of you have asked to see Skylar in her Halloween costume... but I am sad to say that there is no costume! I had a dentist appointment the first week of October and I thought, "Hm... since I am out of the house, I'll swing by Target and Babies R Us to see if I can find a cute outfit/costume for Skylar!" I was shocked to find that the stores were completely picked over on all of their costumes and everything Halloween was marked down 50-75% off... Seriously?! Here I thought I was right on track with the shopping crowds, but I've been told that costumes have been out since July and August. Geez! I need to get out more, lol. So the day of Halloween, I went to Target to buy candy for the neighborhood kiddos and they're already taking down all of the Halloween stuff and replacing it with Christmas stuff - what in the world happened to Thanksgiving?! I personally would like to enjoy my holidays and certainly not skip any! Okay, I'll get off my soap box... and possibly have a cute outfit to show off for Thanksgiving and Christmas :) Until then, this little onesie of "My 1st Halloween" will have to do! She wasn't in the best of moods... She was probably upset that she didn't have a cool costume, lol.


Skylar is staying pretty stable these days, but the teething is creating a lot of secretions so I am suctioning much more frequently and hope that she doesn't choke or aspirate in the mean time. I am sure it sucks for her too because she can't chew on anything and tylenol is her only relief besides the gum massage I give her every now and then. I can't wait for those little teeth to poke through - I even had a dream about it! I am sure that's all she wants for Christmas!!!

We got the second half of her flu shot and her first RSV vaccine shot today. This is critical for SMA babies because RSV (Respiratory Syncytial Virus) can be extremely deadly even though in healthy people, you would just have cold-like symptoms. RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections typically begin in the fall and run into the spring so we're hoping the shots that we have to get monthly will prevent Skylar from getting this!

The shots are insanely expensive, but luckily we were approved by insurance to get it and they should cover the rest for this year. What stinks is that it is not something that can be done in-home unless you have a certain nursing group (which we don't have) and therefore we have to go to the pulmonologist office where all the sick kids go... Hopefully we didn't pick up any germs there - I called ahead of time to request special care and they were awesome about cleaning the room and taking us in the side door to bypass the waiting area. We'll be going there from now on since the "tech clinic" where we've been going has been less than impressive. We of course hope that Skylar will continue to be healthy (as well as Kyle and I too). We've been sooooo blessed thus far with our health and pray it continues.


So Hospice Atlanta has been making some pretty huge advancements towards getting us in-home nursing in addition to having the hospice help. I got a phone call saying insurance is going to cover one month for now so that I can have an in-home nurse a couple days a week and then re-evaluate (hoping that medicaid will have been approved by then). We're going to have to re-interview nurses and work out the times and scheduling and such, but we're hoping to start that in two weeks! This will be awesome because not only will I have an extra set of hands most of the day, but there will be someone else qualified and familiar with our routine in case something should happen to me or Kyle and we need an extra set of hands!

Another awesome announcement - we're sending out her stroller this weekend to get a makeover thanks to your super generous donations! It's pretty much like "Pimp My Ride" for handicapped strollers, lol. Right now, her stroller is awesome for moving her around, but none of her equipment will fit on it and it's just not easy to get her out without the cough assist, suction machine, and now bi-pap as a back up emergency. We'll be ordering a more portable power supply (battery and inverter) and her stroller will come back with pneumatic wheels (to handle the large increase in weight) and a huge steel tray on the bottom that can hold all of her equipment instead of a small mesh basket. Once we have this, I will be able to take Skylar on a walk in the neighborhood on a nice day and maybe even take her out somewhere. I'll keep you posted on our possible adventures, but we're looking into the zoo and the aquarium if a small outing like a walk in the park is a success.

Her first adventure in her new ride will be our trip out for her birthday party on the afternoon of the 20th!!! I am so excited and can't wait to celebrate with all of our friends and family and everyone who is supporting us. If you're interested in coming, let me know and I'll send you the details :) Nothing too fancy, just hanging out with good food and good friends!

Side note: Just in case any of you were wondering, our mouse friend has disappeared and the exterminators came to re-seal the outside of our house (apparently there was a whole brick missing in our crawl space) so hopefully we won't have any more surprise visitors!

A lot of people have been asking me what to get Skylar for her birthday - please don't feel like you have to get her anything! If you want to get something though, here are some hints to help :) She's not an off-the-shelf kinda gal, hahahaha.

That's really about it. Here are some pictures below from when Annie's mom came to visit for your enjoyment.

"Fred the Fly" can get a smile almost every time :)

Skylar liked her headband from Annie's family and her clip from Nora's family!

Annie's mom brought a fun bucket full of goodies for Skylar - she loved it! Even when she was on her bi-pap, she managed to give us smiles :)

Peace.

Monday, October 18, 2010

11 Months!!!

Well, you know things have been crazy busy because I am just now getting around to updating the blog! Skylar's turning 11 months tomorrow which is so exciting!!! We're really hopeful that we might get to celebrate a full year with her! Since it's been three weeks since my last post, brace yourselves while I try to get you up to speed.

Good news - the explosive diarrhea has stopped! Bad news - Skylar lost a lot of weight for her little body during that time so we're working on putting the pounds back on. She's done really well with the ever so slight increase in the amount of food we're giving her (to try and give her more calories in the day) so we're on the steady climb back to where we were before the diarrhea happened.

Skylar's increased pressures on her bi-pap and cough assist have really helped her out, but we're battling one ill side-effect. Because of the high bi-pap pressures at night, she's either swallowing air or the muscles aren't strong enough to resist the air from getting into her belly and she's getting really bloated. She'll wake up at least once during the night and cries because she's in pain... I've gone in there in the middle of the night to see her belly looking like a balloon that's just about to pop and it's hard as a rock. The Gooden Family taught me a new way to release some of the air in her belly because the vent bags on the IV pole were not working. Right now, we're just trying to figure out the best balance of pressure and bloating. If we lower the pressure, she doesn't breathe as easily the following day, but if we raise it, then we bloat her and she doesn't sleep well (and I don't sleep well either). Hopefully, we'll figure it out soon!

Great news - hospice is providing a CNA (certified nurse assistant) to help me bathe Skylar twice a week. The woman is super sweet and gentle and helps me get Skylar back in the tub! That's right, we're back in the tub :) I had been giving her "sponge baths" for a while because I was unable to move Skylar back and forth with all of her equipment when she wasn't stable. Now that she's stabilized, Skylar seems to enjoy the time in the water and I have an excuse to turn the heat on, lol. I thought Skylar's legs were not able to move anymore on their own, but she tries so hard to bend at the knee when she's in the water and every now and then I'll see them wiggle.

What else... Oh yeah! The van! We had our first outing in our minivan last week for Skylar's pulmonologist appointment. Despite having to wait three hours (one whole hour in the waiting room packed out - my worst nightmare for Skylar) before we saw a doctor, the appointment went really well. The doctor said Skylar's lungs sounded nice and clear, she looked good, and was doing well all things considered. The only downside is that our doctor seems to think we've reached the max pressures for Skylar's body to handle so if she tanks again, there may not be much more we can do. Anyway, the ride itself was great - Skylar could see out the window which she seemed to really enjoy and we had Finding Nemo playing in the background. It's really nice to have and hopefully we can get out as a family soon when we get the right power hook up.

When Kyle was out of town this past week for work, my cousin from Indiana flew down to stay with me and help out. It was so much fun to see her and have some quality one on one time together.

She brought down some goodies for us so we're ready for football season :) As you can see, Skylar's hair is finally starting to come in a little thicker, but it still hasn't decided if it wants to be brown, blonde or red - it's a combination of all three right now and changes depending on the lighting...

My whole family is pretty much from Indiana (most are still living there) - we'll get good use out of our colts gear! In fact, my dad flew up to Indiana the following weekend for my grandma's 80th birthday and some of my family up there sent back little leg warmers for Skylar! I'm so excited because I haven't been able to find leg warmers down here. Skylar sleeps a lot on her side and the snaps on her outfits sometimes push into her legs and can cause pressure sores so I was looking for another alternative to the long legged onesies. Also, her pulse ox sensor on her foot and the cord are annoying with pants and tights and such. We can't put anything really tight on her foot or leg with the cord or it pushes into her leg too much. Leg warmers are perfect because I can put them on her legs, then put the pulse ox sensor on her foot after they're on, and not have to worry about metal snaps or taking them on and off when I change her diaper. We also got some loose fuzzy socks that have been awesome! The cold definitely took us by surprise!!! Poor Skylar was freezing her little butt off the first night it turned cold because we weren't prepared. We're good now though :)

No word on the home makeover... and I have to assume that we did not get it because I think we would've heard by now. Oh well - it was a long shot, but fun to think about. We're going to try and hold onto our property as long as we can, but we have other priorities. Medicaid is still a nightmare and we need to get that sorted out before the new year when we have to start paying out our deductible again. There's always something...

Children's Scottish Rite is hosting an SMA conference for doctors and nurses in GA the second week of November and I am very honored and excited to be on the parent panel for the day. I will be speaking along with Ashley Manross and Stephanie Miller to try to help the doctors and nurses who attend learn more about SMA, how to care for our children, and answer any questions they have to help them understand the disease on a personal level as well. In addition to speaking, I'll have information about our GA Chapter of FSMA. We'll be having a member drive soon, so if you're interested in getting involved with our GA Chapter, please let me know! We have plenty of volunteer opportunities with fundraisers in the works for 2011.

Last, but certainly not least, I'd like to introduce you to the newest member of our household:

I was cleaning up Skylar's room and getting all of the equipment out of her room for Soft Touch Medical to pick up (long story short, now that we're on hospice, they have a contract with a different equipment provider so we had to switch everything out). I was moving some oxygen tanks out of the corner and this fuzzy little brown thing darted across the floor under her bed, then across to her shelves. I screamed like a girl and then sat there waiting to see what the heck it was - it moved so fast, I couldn't tell at first... I was cracking up! Kyle was gone and there was no way in hell I was going to try and catch that thing myself. After a few minutes, I saw this little brown triangle head poke out from behind the shelf... I picked up my camera and scared it, but it finally made another appearance for me to snap some shots. The exterminator came and brought us glue trays to catch it, but the animal lover that I am, could not bring myself to use them on a mouse... roaches, sure, but not a mouse. So it disappeared in our laundry room for a day and then made another appearance the next day. We set a ghetto mouse trap with peanut butter and crackers, but so far have just attracted roaches. Lovely, I know.

So that's all the excitement in the Jones' house these days... Have a great week! Peace.

Wednesday, September 29, 2010

What a Trooper...

With Skylar bouncing back from our last ditch efforts, we're filled with joy and thanksgiving for more days with our amazing little girl. She's such a fighter and I am in awe of her strength, spirit, and will to live. I honestly don't know what I am going to do with myself when she's gone... For now though, I am not worried about it because I am continuing as her full time mom and caregiver and enjoying every moment. Well, maybe not every moment...


Skylar's antibiotic that we had her on as a precautionary measure has caused explosive diarrhea!!! And not just a leak out the side of the diaper either... there have been several days now where the poo is literally up to the base of her neck or her arm pits (see above :)
Luckily, the two times it has covered her body, our hospice nurse was on her way to our house to check on us and was able to help me. I don't know what I would've done without her except call my parents or a neighbor friend to come over, because there's no way I could do it by myself. Skylar is floppy all over (she can only move her arms and hands a little bit at this point - maybe wiggle her feet on a good day too) and to clean her whole body without a limb flopping back into the poo or stressing her out is near impossible. I can't lift her unless I have both arms supporting her body, which leaves me nothing to pull out the nastiness underneath her let alone wipe her down and change her outfit. Thankfully, her dirty diapers haven't been too smelly :) Regardless, I would much rather have a baby with explosive diarrhea than no baby at all!!!

Skylar's not been extremely happy this past week even though she's doing really well off bi-pap during the day and I think those teeth might be trying to work their way through. She's got a pretty serious ridge showing on the top and you can see shapes starting to take form where her two front teeth are going to be. I know I said this 5 months ago, lol, but I think her teeth are coming in! It sucks because she can't ease the pain by chewing on anything and she can't swallow the extra saliva being produced so it seems miserable for her, but she's a trooper and she's surviving. She's just recently started to close her mouth and attempt to "suck" on her lips even though she doesn't have the strength to suck or chew. I've attempted to give her a pacifier again (she gave that up at least 6 months ago) to help her teething but she doesn't have the strength to hold it in and it just creates more drool and causes me to suction more. I am just massaging her gums for now in hopes of relief.

As far as help in the home goes, our hospice nurse is coming twice a week for an hour at a time... It's kind of a disappointment after hoping for 6 hour a day help, but she's had perfect timing when I needed her so far. I pray that continues! In the meantime, we're fighting to get in-home nursing in addition to hospice until our medicaid kicks in. Our medicaid application is still taking forever, and we're continuing to get notices that we're missing such and such or there's been a set back because of so and so. With our diagnosis, there shouldn't even be a question whether or not we qualify. We started the process in May and my blood could boil thinking about the whole thing so I'm going to switch topics :)

This past weekend we had the honor of having Annie's mom come all the way from KY to stay with us to meet Skylar while Kyle was out of town for a night. It was wonderful to have time to talk, cry, laugh, and share stories with one another. I was so happy she had a chance to meet Skylar, who is so much like Annie (except Annie had fire orange hair :) and she seemed to really enjoy the time with us too. It's been so fun getting to meet all of our "SMA friends" in person over the past month since we only get to talk on the phone usually. Here are some pics from Nora's visit two weeks ago...




Drumroll please.... We have a van coming!!! One of my long time friends from grade school has a mom with a minivan who doesn't have a need for a van anymore as long as she has a vehicle of some sort. She's offered to trade vehicles with me for as long as I need it so we get her minivan while she takes my blazer. This is a huge blessing because we really couldn't afford to take on a monthly payment from leasing or buying a van and didn't want to use all the money in savings to buy a used one. All of the incredibly gracious donations received have been going to medical bills and supplies for Skylar. We have a little bit saved up that we could have put towards a van, but didn't feel like that was a wise use of the money given to us. Secretly, I was hoping that we would get the extreme makeover and they would throw in a van with the new house :) Oh well. No news on that by the way. They started in Baltimore and were in Nashville, TN last week so if they come to Atlanta, I have to assume it would be soon since they're headed our direction, but I haven't heard anything at all.

I think those are all the updates for now :) A quick shout out to the moms at my church who have been such an amazing support to me the past two weeks (and really since the diagnosis) Thank You!!!

Peace.

Friday, September 17, 2010

Record Lows...

So I thought I was speechless the week before I wrote the last post, but I had no idea the silence that would come from a complete lack of words the past two weeks. I've been telling people for almost a week that I am trying to update the blog, but I honestly didn't know what to say, and still don't really, but I'll do the best I can. We're on this extreme emotional roller coaster right now...

Labor Day weekend, a lot of my family came down from Indiana to meet/see Skylar and celebrate my birthday. I was hoping for a good weekend, but wasn't too optimistic after the incident on Friday when her stats weren't looking so good. Saturday, Skylar struggled off bi-pap pretty much from the moment we took her off. She wasn't crying in a lot of pain, but she certainly didn't look happy or comfortable either. After a few hours, we put her back on bi-pap because it just seemed to help her more. We were thinking that all of the rest on bi-pap Saturday might help her have a better day Sunday, but it was quite the opposite. Sunday, we tried to take her off bi-pap and she cried like she was really in pain for the few minutes we had it off to run the cough assist. It was heartbreaking. There's a whole other element when people are around too - you want Skylar to have a good day so that's how they remember her... you don't want to freak people out if something bad happens, and many more thoughts go through my head, but I'll spare you.

Back to the weekend... Knowing that she doesn't make a lot of sound unless she needs something, when she does make sound - especially "loud" for her, it's a big deal. We put her back on bi-pap and she was better temporarily. Still not happy, but not in pain. Then, for seemingly no reason, she started fussing and crying - eyes pink, face flushed, tears streaming, mucous/drool pouring out of her mouth, and these awful little cries. It was horrible. We asked my family to leave, even though they were leaving that night to go back to IN, because we needed to process everything and care for Skylar without worrying about what everyone else is thinking and freaking them out. I hate that we had to say good-bye like that, but they understood. Ashley Manross came over that evening to possibly offer some insight with her experiences and just be a support to us (mainly me :) It was helpful and eventually Skylar calmed down and was able to get some sleep. Monday was another horrible day with painful crying, sad faces, uncomfortable movements, and just a rough day period.

I listened to her lungs and they sounded perfectly clear. I ruled out pneumonia, a cold, or anything like that because she didn't have fever, no gurgle in her lungs, and didn't have any other signs of illness. I didn't think it was a collapsed lung because I had been told that if it were, Skylar wouldn't be able to keep a high oxygen level on bi-pap and she was doing just fine. I called our pulmonologist, but she was out of town for the week. I called our pediatrician who was gone for labor day but would be back that night and said he would come over to meet with us and evaluate her. Her lungs sounded good to him too and we tossed out the thought that her body just might be quitting on her and this could be the end. I called an SMA researcher out in Utah who has focused her career on SMA (she's also a neurologist) to get her input and she said there were a couple last ditch efforts we could try before we accepted this as the end. Just in case those didn't work though, we decided it would be good to get hospice in place.

Side note: We had just been approved for in-home nursing and they were supposed to start the Tuesday after labor day. The really crappy thing about insurance is that they will not cover in-home nursing and hospice at the same time so we had to cancel the nursing after all the work to get in approved and sign up for hospice instead. SOOOOOOOO Frustrating! The crazy thing is that we need in-home help now more than ever because she's struggling more, but apparently insurance doesn't look at it that way! They pay hospice a daily rate instead of per hour or per item so all other care is void. In-home nursing was going to be my help, my relief. However, I am okay with letting it go because I know hospice is better for Skylar right now, even though it would be nice to have both...

Last Ditch Efforts: We increased her bi-pap pressures and her cough assist pressures and put her on an antibiotic just in case something was starting. We met with hospice to learn more about what they can do for Skylar and got that set up. They care for children of all ages dealing mostly with pain and symptom control, counseling if needed, and communication with doctors. Basically, for us, they are going to be our pain management team from here on out and are also supplying us with equipment and supplies. A nurse will come to our home weekly or as needed to evaluate Skylar (check her lungs, vitals, etc.) and to make sure we have what we need - including morphine and other medications just in case. It doesn't mean we think she's going to die in the next few days (although when we set it up, we had those thoughts) but we're just wanting to be more prepared in case something does happen...

We were really surprised how fast things happened and how unprepared we felt. I had been putting off thinking about hospice, burial, etc. for obvious reasons, but since my last blog post, we've been forced to go there, which was good for us. Don't get me wrong, it totally sucked, but we needed to figure out what to do when the time comes. With that said, if you've called us in the past week or two and haven't heard from us, we haven't really been up for talking. Sorry. It doesn't mean we don't love you... We've hit record lows in our lives - Skylar's oxygen was at an all time record low at 40 about a week ago, while Kyle and I have never been so devastated and at an emotional low point with the whole situation. We were preparing to say good-bye to our little girl, which is something you can really never prepare for. I recall saying, "The whole thing just sucks and there aren't really words to describe it, other than I have a slight glimpse into what Jesus meant when he said, "My soul is overwhelmed with sorrow to the point of death" in Mark 14. I can only say that I have an extremely heavy heart right now and fear what it will be like to hold my baby while she dies and watch her body fail her." As someone who likes talking to anyone and everyone about anything, all I wanted to do is sit with my family and cherish every minute of it without any interruption from the outside world.

The good news is that she's bounced back a little bit. I wrote in an email, "We had called in hospice, they came yesterday morning, we had morphine and other heavy drugs brought to our house, and they told us what her death might be like to prepare us... Not the best morning I've had to say the least. After they left, we took Skylar off her bi-pap to do the cough assist and suction her out and get her machines cleaned out, and she surprised us. After we got all the junk cleaned out, instead of painfully crying like she did the day before, she actually smiled. I can't tell you how much that was needed for Kyle and I - to have our spirits lifted. She seemed almost to be back to her old self and actually gave us a giggle or two. I told Kyle that she heard hospice talking and decided to get her act together, lol. She was able to hold her own for 4 hours or so. Anyway, we are still keeping things in place just in case it was a temporary good day, but we're clinging to that good day with hope for more."

Since then, we've had good days and bad, and continue to take things a day at a time... We're still not entirely ready to be social again as her days bounce back and forth, and therefore, our emotions and everything else that goes along with that do too. For example, two days ago was a little rough. Skylar was holding good oxygen levels, but at the sacrifice of her heart rate which was competing with that of a humming bird so we put her on bi-pap pretty much the entire day to give her rest. Yesterday was a great day. Not only was Skylar holding great numbers (oxygen and heart rate) all afternoon off bi-pap, but Nora Gooden and her parents dropped in to say hello after visiting the GA Aquarium before heading back to TN. It was incredible to see this amazing little girl in person after watching all of her you tube videos and keeping up with their blog. Her half-toothed smile and sounds that showed off her personality seriously melted my heart!!! Watching Skylar see another type 1 girl for the first time was fun too because Nora was laying down on the same level as Skylar and was able to communicate in ways I am sure we will never know. Skylar was locked on Nora and was even more talkative after hearing Nora's vocabulary :) It was just a fun day. I'll be posting pictures soon! Today was a good day too. Skylar seems to have a new favorite movie instead of Cars... it's now Finding Nemo. She has consistently smiled every single time the past few days whenever Dori tries to speak whale - one of the cutest things I've seen! Hopefully I can update you with more good days coming this weekend.

Now that we've updated you with the major changes, hopefully they won't be as lengthy unless something else happens... I am going to stop promising to make them shorter, because I feel like they just get longer. Sorry! Thanks for reading :) Stay tuned for more pictures. Peace.

Saturday, September 4, 2010

Downs and Ups...

Lots to update you on... This is going to be a long one, just warning you! However, I just posted pictures to give your eyes a break first and for you to enjoy :)

I have to apologize for not posting sooner, but the week after my last post, we had one of the worst weeks thus far to the point where we thought we were going to lose her. I just couldn't bring myself to post anything because I honestly didn't have the words. It was miserable, torturous, and full of struggling on all levels (physically for Skylar, emotionally for us, etc.). It was a really really long week... To top it off at the end of the week, Kyle watched her oxygen levels drop to an all time low in the 40s while I was at church (we take turns going to services) so when I got home, Kyle was sitting with her on his lap - he looked like he had just been hit by a truck and Skylar was still struggling in the 80s. Later, he told me what happened, how she turned blue and looked pretty much dead. We were beginning to think it was the end. A full week of struggles was new for us - usually it's just a day or two at most. I went to him sobbing one night because I didn't know how much more I could take. Being with her all day and watching her fight for her life constantly was hell for the both of us.

I went back to the beginning of the week when it all started and tried to figure out what had changed... If nothing had changed, then we were thinking her body was shutting down, but we had just switched to a new bi-pap mask. I immediately got on the phone with TJ (Nora's Dad) in TN because I knew they had ordered the mask for Nora. TJ's wife, Jaime, had posted something on the SMASpace (networking site for SMA parents) about the mask having an extremely high leak rate. After speaking with both of them, I started comparing that mask to our previous mask and realized the exhalation ports were extremely loud and didn't have caps to cover them like our old one did. Obviously, Skylar still needs to exhale so we don't want to cover both of them, but we decided to cover one of them to see if that helped. Night and day difference. Skylar seemed much more rested and was much more prepared to handle breathing on her own during the day after we blocked one. The next few nights we kept the port covered and she's been back to her old self :) It's amazing how one little change can affect her fragile body to the point of life or death. I put in a call to her pulmonologist to let her know what's been going on and she was okay with us blocking one of the ports.

This past week she was full of smiles and giggles again, which was amazing timing for my birthday. I had one of the best birthdays - Kyle made me breakfast in bed, Skylar had an awesome day and just seemed really happy, Ashley Manross brought me lunch and stayed to talk with me, and then that evening, after we had her on bi-pap, my in-laws came to babysit while Kyle took me to a Braves game. We got to witness a grand slam which I haven't seen in at least 15 years - Go Braves! This week has been really awesome. I have had a lot of wonderful friends come visit - and I got to meet Nora's mom, Jaime, who was in Atlanta for work. She came over and got to meet Skylar and it was just really nice hanging out with another SMA parent who understands everything, which is why I enjoy my hang out times with Ashley Manross as well. It's so rare to find someone who truly understands what it means to be an SMA parent - no matter how many times you've been to our house, seen the machines, witnessed us suctioning or doing the cough assist after her oxygen drops, etc... it's different to live it 24/7 and I am very thankful for the Manross Family, Gooden Family, Grimes Family and Miller Family and the support they've been.

Speaking of being thankful for support, our church continues to be amazing with friends and acquaintances bringing us meals. The messages on Sundays have been so comforting and encouraging recently even though they would probably seem "difficult" to hear for people in "good" situations or maybe not seem relevant. On Aug. 22, Kris (our pastor) spoke about going through life crisis events and hanging on for dear life hoping to make it through... and when the "shaking" is over, you're left with the stuff that matters. One scripture he mentioned was "For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope." That scripture sounds awesome taken out of context, but God was not promising an easy life... this was said right before the children of Israel were hauled off for 400 years of slavery!!! I'll keep it at that, but it was super awesome to hear and a reminder to ask God for endurance through the tough times. That Sunday was the start of our really bad week I mentioned at the beginning of this post... I am continually amazed how the messages at our church have completely paralleled our lives, specifically, my thoughts and struggles... It's just reassuring to know that I am not alone and that God is with me and is using scripture, our pastor, and the body of our church to speak to me. If you want to listen to any of the sermons, check it out!

I am also continually learning that I am not in control and I have to trust God that He is in control. Today, as a friend was over getting some preggo stuff from me, Skylar's pulse-ox alarm went off. Not typically startling, as this happens frequently in the evening as she gets tired, so I wasn't freaked out... until I looked and saw that her oxygen was not what set off the alarm, but her heart rate. This has happened once before where her heart rate dropped low but came back up right away and I just assumed it was a sensor glitch. Today was different. Her heart rate stayed low for a while, her oxygen then dropped (I'm guessing because the blood wasn't carrying the oxygen like normal since her heart wasn't pumping like it normally does) and she went pale. Ususally, if it's an oxygen problem, she turns blue, but this was all around different. I was more in shock than anything because I can't do a darn thing about her heart stopping. If I did any sort of chest compression, I would probably break all of her ribs, which would be so much more painful than anything else, especially since her problems are respiratory. What's weird was that I was just telling someone that we've been praying that her heart would stop so it would be a quick and painless way to go (at least not as painful or scary as not being able to breathe, starving to death, etc.). Nobody wants to see their child suffer... I ran a cough assist to pull any mucous out in case that was a problem and her oxygen came back up and her heart rate came back up halfway. Over the next 5 minutes, it returned to "normal" for Skylar which is insanely high for anyone else. I put her on bi-pap soon after to give her a break after calling her pediatrician since our pulmonologist is out of town (great timing, right?!). Luckily our pediatrician is awesome and has actually had hands-on SMA experience and is just a super amazing guy. Back to the point - all of these things are completely out of my control and I am trusting God (and learning to trust Him still) with the things I hold closest to my heart, including Skylar. It obviously sucks that anyone should have to go through this... I think of the awesome SMA families I've met who are all young, attractive, and just great people all around. It totally sucks. But, I know through this "shaking" that Kyle and I are learning so much, we're gaining so much perspective on what matters, growing as individuals and as a couple, and are going to come out better people than when we started...

We're hoping for a better weekend as we have family in town for labor day! With that said, I better get going. Thanks for reading my book this time :) Sorry I had to wait so long to post an update. I promise I'll try to be better about that! Peace.

PICTURES!!!

Hey Everyone -

Here are some pictures for your enjoyment and to update you on my growing girl :) She's getting cuter by the day! This also serves as a warning that there is a super long post coming... lol.

So the day we had visitors - including Lucy (3 years old) - this picture was taken. Skylar loved watching Lucy play with her plastic stack-able cups compliments of the Grimes Family.

Looking up at Corrie while getting her head rubbed!

Skylar was laughing at mommy and watching her mobile in this one :)

Skylar's eyes continue to captivate me... she's so gorgeous! She has her Daddy's lashes - Kyle looks so freakin' cute as a girl, lol!!!

Hope you enjoyed the update through pictures :)

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

Amazing!

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.

Saturday, July 17, 2010

Updates...

So after a very rough last week, I made several phone calls Friday to the doctors to let them know what was going on... We had an upper GI scheduled for Monday where they put barium in her belly and follow it to make sure everything is still in place. We had been giving her bolus feeds (about 3.5 ounces at a time) and it just seemed like she started having problems overnight after every feed so we were afraid that her fundoplication had come undone or something else was seriously wrong...

The good news is that everything is still in place and her belly seems to be functioning fine. However, they were very surprised to see that her belly looked almost completely full after one ounce. Usually, an 8 month old can handle 6-8 ounces at a time by this point, so we were thinking 3.5 or even 3 ounces would be just fine. We had no idea SMA affected the belly like that. We still don't have answers why her belly can only hold that much, why it's not growing, etc. but the good news is that we've switched to continuous feeds (where we just give her a little bit at a time through the entire day with the feeding pump - an ounce an hour) and Skylar's been much better!

She still has moments of struggle during the day, but nothing compared to last week... I seriously thought it might be the end. Thankfully, I was wrong :) The only bad thing about continuous feeds is that the feeding pump on the IV pole with her feeding bag is just one more thing attached to her all day. It's so much harder to move around the house now because now I have to deal with the feeding set up and the pulse ox machine (also attached to her 24/7) and suction machine (which just goes everywhere with us). We're constantly adapting.

We've had a good week so far. Kyle's birthday is this Sunday (tomorrow) so we're going to try to hang out as a family and enjoy the day. Skylar will be 8 months on Monday :) so there's a lot going on! Next weekend, I am going to be in a wedding in Valdosta and it will be my first full day and overnight away from Skylar... That will be tough, but I am so thankful to get to be a part of my friend's wedding. She has Cystic Fibrosis (CF), which is also a genetic disease, and is fighting hard and doing well - a true testimony to beating the odds! She's been a great encouragement to us as well as an amazing example how to live life.

During the coming week, we have an appointment to get Skylar some new wrist splints since she's outgrown her old ones... We'll have to go again the following week to get the ones for her feet/ankles made. Hopefully, these doctor visits won't be as stressful because she shouldn't have to get undressed or poked or weighed...

We're gaining momentum on facebook with the number of fans we have! The Clemson Alumni have really stepped up in supporting us as well as some KD Alumnae... Thanks! I don't know if we'll hear anything or when we'll know if they have or have not chosen us, but I'll certainly keep everyone posted as I find stuff out. We really do feel extremely loved by all of our friends and family and couldn't ask for better people to be surrounded by during this time whether we get the makeover or not. Thanks so much!!!

Other updates: I still have to follow up with the nursing company about whether we can get that or not. We are in the appeal process for medicaid after being denied the first time (which we expected) and have applied for the Katie Beckett waiver. It's a painfully long and tedious process that should be against the law in situations like ours where time is of the essence. I swear they do everything they can to draw it out as long as possible and make it as hard as possible so that people give up. I won't get started...

We haven't gotten a van yet - we have a lot of shopping to do and we want to make sure we can find a decent one used so that we don't use all of our money on the van. We have a lot of other expenses and bills so we want to use our money wisely, but we're still excited about getting one and hopefully it won't be too much longer! A leader at our church as been a big help with helping in the hunt for one.

Oh! I can't believe I almost forgot to tell you this... Skylar laughed during a movie for the very first time Thursday!!! We were watching Monsters, Inc. and all of a sudden, she just giggled. I looked right over at her and she was just staring at the movie smiling. It was awesome! I laughed at the fact that she laughed at the movie, and we both started laughing again. She's such a cutie!

Anyway, that's about it for now. Hope everyone is having a great weekend! Peace.