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.


  1. So glad to hear she is doing well. I was thinking about you guys today while I was at work for some reason and was glad to see your post tonight. She is such a sweet little angel in her Colts shirt.

  2. Geez. I hate those things! (mice)
    Praying for you all.
    I am thankful to hear that Skyler has been somewhat stable. Praying that you will be able to celebrate a full year with that precious girl.
    She is precious.
    Peace to y'all.

  3. OMG you are one amazing animal lover! I would have nasty little mouse traps set up every where :-)

  4. Ok, LOVE this post. SO GLAD about the van and a nurse to come help you twice a week - huge BLESSING. Skylar's Colts shirt is adorable...could she be any cuter!? AND Ratatouille came to live at your house....did you tell Skylar that!? =) REALLY excited about you speaking at CHOA Scottish Rite....what a great thing for the hospital to be putting on and so awesome they are involving parents too. Love that & love ya'll =)

  5. Happy 11 Months Skylar!

    Thanks for the update Ashley- good to hear from you again. I've been thinking about you guys lately. Please give Skylar a little kiss for me and say hello to Kyle!

    Much love!

  6. happy 11 months skylar :)

  7. AWW! She is soo cute! I love the Colts wear!!

  8. OH and BTW, Our band does a lot of fundraising... I MEAN A-L-O-T... so Maybe after the upper band pays for it's new york trip I can ask about doing some fundraising for my sweet cousin Skylar?