Oh my goodness, I am so far behind...
I was hoping to post something two weeks after her birthday, but things got crazy... Then I thought, surely I will get something posted on her 13 month birthday, but that was not possible either because so much has been going on. The holidays came and went, family came and went, and here I am - left sitting at my computer finally with a little "spare" time. I should probably shower, but I really need to catch up on the blog :)
So starting back in November, we now have a generator that we bought off craigslist from a man who was unemployed and really needed the money to get through the end of the year. It was a great deal for both of us. I love win-win situations!!! We pulled it out once when some bad storms were coming through, but thankfully have not had to use it since. Our power outage was a nice reminder that we are not in control, yet we are being taken care of anyway.
Thanksgiving was really awesome. We fried our first turkey in our backyard with Kyle's parents and it was delicious! I promised a Thanksgiving picture of Skylar in her cute dress so here ya go!
In the beginning of December, Skylar got her second round of RSV vaccine but it was the first time we did it in the home. The nurse was very nice, but the timing was horrible because Skylar had just fallen asleep for her afternoon nap. Luckily, we stalled by filling out paperwork and talking about SMA, but I couldn't keep the nurse waiting for hours. We woke Skylar up and I felt awful because not only did she miss out on some sleep, but she had to wake up and get a shot right away. What a rough day for Skylar. This month, we got the timing better but shots are still never fun...
Kyle' been fighting some sort of cough/sinus bug recently; luckily I've managed not to get it. I am a germ freak so I make everyone wash their hands, cover coughs and wear masks when sick. Even though I get made fun of sometimes, I have to think keeping everything clean and sick people away is part of the reason why Skylar and I have not gotten sick. We feel very blessed that this is the first sickness we've had to deal with all year. Kyle's still fighting the cough three weeks later, but hopefully he'll be better soon.
The week before Christmas, Skylar started getting sick. She had a ton of huge boogers - really thick and goopy - and had no bowel movements. Her digestion slowed and her belly was getting bloated, which of course caused her to be in some pain and not a happy camper. When she doesn't digest well, we have to slow down the rate of her continuous feeding - which means we lose a lot of calories and volume. She lost some weight and it was not a great week for us. We didn't allow a lot of people to visit and the one friend we did allow (because he was going out of the country and wanted to visit before he left) probably wishes he wouldn't have come, lol. While our friend was here, Skylar's residual (the left-over undigested food in her belly) backed up to over 2 ounces and turned green, which caused me to freak out and almost have a breakdown. Usually Skylar has 1/2 ounce to one ounce in her belly, but two ounces was pushing her max. capacity. The fact that it was green was concerning because that meant bile had backed up into her belly. I dumped it out so her belly could start fresh, but that also meant that the pH was altered because I was dumping out a lot of the stomach juices/acids along with the bile. After consulting our pediatrician (the best doctor in the whole wide world to us), we ran her on pedialyte for 24 hours and checked her belly every 2-3 hours to see how she was tolerating it. Things were better the next day and I was completely relieved! I even felt good enough to leave for a few hours to take pictures of our neighbors who just adopted a little boy and our church's Kids Christmas Pageant.
Of course when she wasn't digesting and her residual turned green, my mind asked the question, "Is this it? Is her body shutting down? Isn't digestion one of the first functions to crap out on someone when they're dying?" I try not to allow myself to go there, but if I do visit that thought, I just make sure I don't dwell on it. It's hard sometimes to live completely in the present and ignore all the what-ifs. It's also hard because when I called the hospice nurse, she also brought up the fact that it could be the end since that is their job - to focus on the end and make the process as easy as possible. Our pediatrician also let me know he was not encouraged by the green coloring, but Skylar had proved him wrong before so he said he wasn't making any predictions :) and just gave us a to-do list to potentially make things better.
Since then, she's been much better. After a week, her boogers cleared up, she was so much happier - giggles and smiles - and regular dirty diapers. Lots of leaks, explosive gas and diarrhea, but I think things are starting to settle down and become "normal."
We switched her to a sensitive formula by Similac called Alimentum until we can get the Amino Acid formula covered. We're hoping insurance will pay for it but our hospice manager is working on it... The amino acid formula is like pre-digested food so that everything is in the simplest form which makes it really easy for the body to process, but of course it's more expensive. Right now, there are 11 states that require insurance to reimburse parents for this formula because of the medical need and the expense, but Georgia is not one of them... We'll see if medicaid or insurance will pick up the tab, but if not, we're not worried because God has taken care of us throughout our entire journey. Many people, a lot of people we haven't even met before, have donated money to help our family, and I wish there was a way that we could properly thank you.
Our Christmas was awesome. We decided to pack up and take all of our equipment and stuff to Kyle's parents' house for the weekend and it worked out really well. On Christmas day, my parents came over to join us for dinner. It was a lovely evening and the beautiful snow that fell and covered the ground was the icing on the cake. It was a prefect Christmas. With that said, my heart was breaking for those families who have lost loved ones and could not be together this year. I hope you were able to enjoy the holidays.
Since Skylar is over a year old, it's fun to think about what we were doing a year ago with her... New Year's Eve rolled around and I had to laugh because a year ago, I was standing over the changing table. Skylar was on her back with a bloated belly and I was massaging her gas out while Kyle brought his laptop into the room so we could watch the ball drop together. I remember thinking, "welcome to parenthood..." At that point, we knew something was up because of her "chicken wing" arm but had no clue that her bloating was because she couldn't swallow well and was taking in a ton of air with every attempt to eat.
It was on January 8 - a snow covered day - that we made it to see a specialist for her arm who told us we needed to see a neurologist asap. Our pediatrician called me within 30 minutes after leaving the office (while I was at home depot picking something up for Kyle) to tell me it was serious, but still would not tell me specifics. I just remember having Skylar bundled in her infant car seat next to a stack of wood on an orange flat bed home depot cart looking for shelving hooks when I got the call. I broke down as soon as I hung up with the pediatrician and called Kyle. I wanted to call him for comfort but didn't want to freak him out so through the tears, I asked him what kind of hooks he needed because I forgot... I was partly laughing because I was sobbing (knowing that something could seriously be wrong with our daughter) and people in the store didn't know what to do with me. Everyone in an orange apron looked like they wanted to ask me for help but were too afraid of what I might say or do, lol. I made it home and thus our journey with SMA began.
Anyway, Skylar seems to be stable now and we're continuing to enjoy the time we have with her. We've had family and friends in town after the holidays and have had a great time catching up with them. My dad's birthday was the 2nd of this month too so we've been REALLY busy! Not to mention I have been working on photo-editing, my own website, and other design projects like a logo for The Addy Grace Foundation (SMA family I know) and two other businesses. Not really sure where I get the time, but that's why the blog has been put on the back-burner.
Okay, I will do my best not to wait so long so you don't have to drink three cups of coffee to get through the next post :) Hope you all had a wonderful holiday season and a happy new year!!!
It's hard to know we are facing horrible odds this year, but we're trying to stay optimistic and continue to take each day at a time. Here's to 2011... Hoping to see some teeth poke through!