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.