So there's a ton of stuff going on with the preparation to make sure Extreme Makeover Home Edition has everything they need to choose us (mainly a video to introduce our family and our house). We've been filming all week, then realized we were filming everything but the requirements, lol... Something that would've been good to look at before starting! So we're almost done and will send that in hopefully the beginning of the week. If you're on facebook, please "like" our fan page and share it with your friends so that we can show them we have support and people to come out and help :)
This past week has been great because we've had family in town that we haven't seen in a long time! They hadn't met Skylar before so it was really fun to have them hang out and stay a while. Kyle and I got out on July 4th for the first date in months and months. We put her on bi-pap early and left her with Kyle's parents, aunts, grama, and cousins - I think between all of them, they could handle entertaining her :) We have some more family in this week, but Skylar's been struggling some, so I feel bad that we haven't been the best hosts...
This past week has also been really really rough emotionally for me. After adjusting her feeds, Skylar had a great weekend! We thought the problem was solved and everything was good. She seemed happy... Tuesday we had a lot of company in the house and it might have just overwhelmed Skylar, but that was the first day of her struggles this week. Wednesday was even worse - the physical therapist from Babies Can't Wait came out (a state funded program that provides in-home therapy and other things to babies in need) and showed me some new things. She's only coming twice a month, which I thought was lame at first that they wouldn't come more to help me, but after Skylar's reaction, I'm kind of glad. Skylar dropped into the 70's twice while the lady was working on her. I feel like I need to say this woman is super nice - I really enjoy her teaching me things to help Skylar, and she's got a great personality. However, I don't know if Skylar is just really sensitive about other people touching her or if she's really in pain from this woman moving her around, or maybe both, but it was a hard day. Once the physical therapist left, she never really recovered. It was a battle all day.
I haven't been able to give her a bath all week because she's not stable enough to put her in the tub and I don't trust taking her pulse ox machine off. It sucks. I am so tired of this. I am not mad at Skylar of course, and I'm not mad at God, I am just upset at the whole situation. I am mad at this disease. I am angry that it is slowly taking the life away from my daughter. I am tired of the freaking pulse ox alarm not stopping no matter how persistent I am at suctioning, I am tired of the dang mucous that builds up over and over, and I am so sick of seeing my daughter fight for her life. I will continue doing every thing I can to help her until it comes to the point of needing life support, and I certainly don't wish for that time to come any time soon. But I just hate the whole thing. Yesterday evening, if Skylar hadn't been in the house with me, I would've screamed at the top of my lungs, thrown something across the room, and probably broken a few things and made some dents in the wall and then collapsed on the floor sobbing. That is where my heart is right now because I am so exhausted in every sense of the word and so sad for Skylar, for our family, for what we have to endure. Thankfully, Skylar was in the room so I held it in, not to scare her and I am sure our landlord is thankful too :)
Anyway, I had a good cry last night and one this afternoon when Skylar was struggling again. I keep noticing that it is after her feeds still so we're going to call the GI doc tomorrow and ask if he can take a look at her to see if her fundoplication is still in place and if we need to switch to more continuous feeds. I am also going to let our pulmonologist know what's going on to see if there's something we're not thinking of that she can help with. It's so frustrating not knowing what is causing this and not knowing how to make it better. My biggest fear is that there won't be anything and this is just the beginning of the end. I try with my whole heart not to think that way and certainly don't want it to be true, so that is all I am going to say of it. We could use your prayers for Skylar's happiness and ability to breathe - wisdom for her doctors and for us - and for my strength (Kyle's too) but emotionally for me dealing with it all day.
I'll write more soon - I have had a great week in the sense that I have been able to get to our church's Vacation Bible School this week and take pictures for them :) it's been great and the kids are all adorable and fun. It's been such a blessing and much needed time out of the house and behind a camera again. I miss it, but am so thankful for the time I have with Skylar so I'm not too worried about it - I'll have my chance again some day. I have also been helping Haven Womens Ministry with some design projects for an upcoming golf tournament event. The Hope and Light Foundation (a local SMA charity that has helped us with resources) is having a fund raising event coming up as well and I am working on a poster for them too. My plate is full. A dear friend from church has been coming to give me shoulder and back massages because I've been having problems with pain lately (too much bending and lifting maybe?). I also got my stitches taken out this morning (the third or fourth round of pre-cancerous moles) since Skylar's been born). Lots going on! Wanted to update you because it would be a novel if I waited any longer... Okay, gotta run! Peace.