Celebrations!

Lots of celebrations going on this month - Kyle and I celebrated three years of marriage yesterday, Skylar is going to have her first year birthday party in 2 weeks, and then Thanksgiving! I love the fall and holidays :) I'll also be speaking at the SMA conference at Children's Hospital next week which is really exciting too!

I just noticed too that I really slacked off last month - one blog post! I'll try to be better :)

So many of you have asked to see Skylar in her Halloween costume... but I am sad to say that there is no costume! I had a dentist appointment the first week of October and I thought, "Hm... since I am out of the house, I'll swing by Target and Babies R Us to see if I can find a cute outfit/costume for Skylar!" I was shocked to find that the stores were completely picked over on all of their costumes and everything Halloween was marked down 50-75% off... Seriously?! Here I thought I was right on track with the shopping crowds, but I've been told that costumes have been out since July and August. Geez! I need to get out more, lol. So the day of Halloween, I went to Target to buy candy for the neighborhood kiddos and they're already taking down all of the Halloween stuff and replacing it with Christmas stuff - what in the world happened to Thanksgiving?! I personally would like to enjoy my holidays and certainly not skip any! Okay, I'll get off my soap box... and possibly have a cute outfit to show off for Thanksgiving and Christmas :) Until then, this little onesie of "My 1st Halloween" will have to do! She wasn't in the best of moods... She was probably upset that she didn't have a cool costume, lol.


Skylar is staying pretty stable these days, but the teething is creating a lot of secretions so I am suctioning much more frequently and hope that she doesn't choke or aspirate in the mean time. I am sure it sucks for her too because she can't chew on anything and tylenol is her only relief besides the gum massage I give her every now and then. I can't wait for those little teeth to poke through - I even had a dream about it! I am sure that's all she wants for Christmas!!!

We got the second half of her flu shot and her first RSV vaccine shot today. This is critical for SMA babies because RSV (Respiratory Syncytial Virus) can be extremely deadly even though in healthy people, you would just have cold-like symptoms. RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections typically begin in the fall and run into the spring so we're hoping the shots that we have to get monthly will prevent Skylar from getting this!

The shots are insanely expensive, but luckily we were approved by insurance to get it and they should cover the rest for this year. What stinks is that it is not something that can be done in-home unless you have a certain nursing group (which we don't have) and therefore we have to go to the pulmonologist office where all the sick kids go... Hopefully we didn't pick up any germs there - I called ahead of time to request special care and they were awesome about cleaning the room and taking us in the side door to bypass the waiting area. We'll be going there from now on since the "tech clinic" where we've been going has been less than impressive. We of course hope that Skylar will continue to be healthy (as well as Kyle and I too). We've been sooooo blessed thus far with our health and pray it continues.


So Hospice Atlanta has been making some pretty huge advancements towards getting us in-home nursing in addition to having the hospice help. I got a phone call saying insurance is going to cover one month for now so that I can have an in-home nurse a couple days a week and then re-evaluate (hoping that medicaid will have been approved by then). We're going to have to re-interview nurses and work out the times and scheduling and such, but we're hoping to start that in two weeks! This will be awesome because not only will I have an extra set of hands most of the day, but there will be someone else qualified and familiar with our routine in case something should happen to me or Kyle and we need an extra set of hands!

Another awesome announcement - we're sending out her stroller this weekend to get a makeover thanks to your super generous donations! It's pretty much like "Pimp My Ride" for handicapped strollers, lol. Right now, her stroller is awesome for moving her around, but none of her equipment will fit on it and it's just not easy to get her out without the cough assist, suction machine, and now bi-pap as a back up emergency. We'll be ordering a more portable power supply (battery and inverter) and her stroller will come back with pneumatic wheels (to handle the large increase in weight) and a huge steel tray on the bottom that can hold all of her equipment instead of a small mesh basket. Once we have this, I will be able to take Skylar on a walk in the neighborhood on a nice day and maybe even take her out somewhere. I'll keep you posted on our possible adventures, but we're looking into the zoo and the aquarium if a small outing like a walk in the park is a success.

Her first adventure in her new ride will be our trip out for her birthday party on the afternoon of the 20th!!! I am so excited and can't wait to celebrate with all of our friends and family and everyone who is supporting us. If you're interested in coming, let me know and I'll send you the details :) Nothing too fancy, just hanging out with good food and good friends!

Side note: Just in case any of you were wondering, our mouse friend has disappeared and the exterminators came to re-seal the outside of our house (apparently there was a whole brick missing in our crawl space) so hopefully we won't have any more surprise visitors!

A lot of people have been asking me what to get Skylar for her birthday - please don't feel like you have to get her anything! If you want to get something though, here are some hints to help :) She's not an off-the-shelf kinda gal, hahahaha.

That's really about it. Here are some pictures below from when Annie's mom came to visit for your enjoyment.

"Fred the Fly" can get a smile almost every time :)

Skylar liked her headband from Annie's family and her clip from Nora's family!

Annie's mom brought a fun bucket full of goodies for Skylar - she loved it! Even when she was on her bi-pap, she managed to give us smiles :)

Peace.