Today, August 19th, we celebrated Skylar's 9 month birthday and it was a good day. We had some friends come visit for lunch (a friend of mine and her almost 3 year old) which Skylar loved! We also got the good news that we are finally getting approved for the in-home nursing care :) the paperwork took forever to get through doctor's offices, the nursing company, then insurance, but I will soon have a set of extra hands around during the week to help me which I am really looking forward to. We got to meet the nurse today, and she seems really great. She has worked with a lot of trach patients and other severely handicapped kids, but never an SMA baby before so hopefully we can get her up to speed fast. Medicaid is a whole other story... I don't know if we'll ever get that in Skylar's lifetime.
A lot of people have been asking, and I wish I had something good to tell you, but no updates on the extreme makeover yet - I think it takes at least a month for them to even get to the application (I have to think they get hundreds a day) but if I hear anything I will definitely post about it!!! We're still trying to get support by people "liking" our fan page on facebook and making any connections that could possibly help us get chosen (for example, a manager of a chick-fil-a writing a letter to the show letting them know that they would supply food to the volunteers, the Clemson football coach calling ABC to put in a good word for us, etc.)!
So it's been a rough week for me... Skylar struggled while I was gone at a wedding this past Saturday and had a recovery day Sunday. By that, I mean she wasn't full out struggling, but she was working hard to breathe and wasn't really happy. Then I found out about my friend who lost her little girl, Annie, and I was an emotional mess (see last blog post, lol). The week started with a few okay days leading up to today - no major scares, but hardly any smiles either. Maybe that's because I didn't have any smiles either... Emotionally, I was really struggling thinking about losing Skylar, what that would look like - her death, funeral, burial, etc. and I almost couldn't function (it didn't help that my hormones were crazy too). After talking to Annie's mom a few times, it all became very real for me, and it was really good to talk to her. I had a few good cries with some of my friends over the phone and with Kyle at home, however, I have to go back to the daily mindset of not allowing myself to focus on what could happen and instead, just take one day at a time. I lost sight of that and it's amazing to me how powerful the mind can be. I have inspirational quotes on my google home page and this is the one for today, I thought it was very fitting:
"The first requisite of success is the ability to apply your physical and mental energies to one problem without growing weary." - Thomas Edison
I was thankful for a few smiles today and happy we made it to the living room! We had been staying in the nursery all day the past few days because I was afraid to move her away from her machines... It's a lot of work to carry her and the pulse ox machine, then another trip to transfer the suction machine and feeding pump/IV pole, then another trip for any blankets and toys we might want to take with us or diapers and wipes and other supplies only to move it all back again since her cough assist stays in the nursery. Today, I brought the cough assist machine up to the living room with us because I knew we both needed to get out of the nursery. I would be more willing to move that thing around if it wasn't an awkward shape and ridiculously heavy. It was nice to move around today - we watched some movies today on our "big" tv in the living room (as opposed to the little portable dvd player we have in her nursery) and Skylar got to watch Lucy (the little girl who came over today). They had fun playing peek-a-boo, watching Finding Nemo, and playing with other toys! I'll post a few pictures soon - I know it's been a while!!!
As it is still SMA Awareness Month, our newly formed GA chapter of Families of SMA is working on becoming "official" with a post office box, phone number, and website. As Vice President, I am hopefully going to get the website up and running soon and will post a link when it's ready. I've also been helping Annie's mom with some graphic design work to raise awareness in KY and have a little something to remember Annie by... Here's the business card front that I've worked on for them and their story is written on the back of it:
I really loved that Annie's mom requested a pink daisy to be a part of her "logo" and was so excited to be able to give something back to them to have as a memory and pass out to people to raise awareness. I had so much fun coming up with Skylar's "logo" of orchids and it was an honor to be able to create something for Annie. I feel like Annie looks like she could be Skylar's relative of some sort. Nora is another little girl with type 1 who looks very similar - maybe that's why those girls and their families have a special place in my heart...
I am so glad that my talents in graphic design and photography can be used to help the SMA community and people in my life. It feels great to be doing something that you love to benefit others. I only wish that everyone could do the thing that they love and not have to worry about money and paying the bills - my husband included. He's been working extra hard lately with a few unexpected changes in his department and I am just so thankful for him, his job, and the love he has for us! Because of that, I am able to stay home with Skylar and do graphic design and photography even if I don't make any money with it :)
I know a lot of friends have told me that they were thinking about our family a lot this past week. There was definitely a reason so thank you for the prayers, the words of encouragement, meals, and love you've given us. We're grateful beyond words for the way everyone's supported us through this time in our lives and only hope to be able to pay it forward or give it back if there is a need and we're able to meet it. Have a great rest of the week! Peace.