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.