Wednesday, November 17, 2010

Big News!

Well, I thought I would update you before things get too busy around here and I write another short novel :) A few big things have been going on and it seems as if things are finally coming together... (apologize in advance for any run-on sentences! I am a long-winded person and tend to write that way too according to my husband :)

First: WE HAVE MEDICAID!!! Finally. I almost had a nervous breakdown a few days ago because when I opened the envelope with the letters and her medicaid card, the only eligible dates listed were Oct. 1, 2010 through Oct. 31, 2010. That's right - one month and it is already mid November so what the heck?! I thought, surely, this must be a joke. After talking with a social worker, I was told sometimes medicaid will only give you coverage on a month to month basis. I thought I was going to laugh, cry and hit something all at the same time. I made several phone calls to workers who were conveniently not available to answer my phone calls and also had mailboxes that were full... how nice. We finally got in touch with the supervisor I had talked to several months ago and he assured us that Skylar was covered for a full year. This will hopefully save us from needing to do another fundraiser for our family. It was a nightmare to get medicaid, but I am hoping it will be worth it!

Second: We are waiting on her stroller to come back and should have it today... I still don't have the power supply (battery and inverter) for the stroller, but that's just a matter of figuring out what will work best with our setup and finding it online to buy. Our social worker at hospice is already working with the aquarium to see if we can get out for a special outing with Skylar once we get everything ready and do a test-run at a park or something to give us confidence in going public. It will be an amazing day when Kyle and Skylar and I can get out as a family for fun. The last time we were all out together was when she was a couple months old and was still in her little car bed...

Third: Skylar is about to turn ONE! It is almost unreal for me to think we're going to have a birthday party and she's going to be there to celebrate with us! Doctors never gave us a life expectancy for her, but we saw the statistics online about most SMA babies not making it to their 1st birthday... and if they did, only 20% see their 2nd birthday or something like that. Also, the earlier diagnosed, the more severe so that wasn't looking so good for us either. Right away, I prayed that we would beat the odds and see her 1st birthday. I knew she would be a fighter like her mommy and a survivor like her daddy. The one year birthday was a great milestone to hold onto for hope - a milestone she could actually reach. I am so thankful for a full year with her. It's been such a blessing to see her grow and mature out of the baby stage. Even though she can't move much, let alone crawl or walk, she seems to be more of a "big girl" with her facial expressions, growing length-wise, hair finally growing on her head, but I am still waiting on those teeth to poke through.

It's crazy to think that it has been a year. One year. So much has happened. Sometimes it seems like just yesterday that I brought Skylar home and other times it feels like years have gone by... and every now and then I have to remind myself that this is in fact my life - it's not a dream. It's a tough reality, but one we are able to go through with the support of our friends and family (including our church). We are looking forward to celebrating with everyone this weekend :) I know I said this in my last post, but if you want to come and didn't get an evite, please let me know - I sent it out using email addresses and am afraid I may have left people out without meaning to. If you're someone who was left out, please forgive me and email me so you're not left out anymore!

So I think those are the major updates. Oh yeah... we're still working on the in-home nursing help for me - will update you when that becomes a reality (we're waiting to interview nurses). On a somewhat related note, we were able to get a different approved nursing company to come and give Skylar her RSV shots in-home on a monthly basis so we don't have to go to the doctor's office every month! This is such a huge relief on many levels. When January rolls around and we have to pay out our large deductible, Medicaid should be able to cover the in-home shots which will save us thousands of dollars a month. Not exaggerating. The vaccine is super expensive, which is why most kids don't get it. It's so nice that we can get it in home where it's nice and warm and germ-free for the most part :)

Skylar has been pretty stable the past week. She's had a few episodes where she dropped her O2 levels down into the 60s (I think it was just a bad mucous plug blocking her airway or she aspirated on her saliva and choked pretty badly) but I think she'll be okay. My mom has been a HUGE help this past week and has been over all last week to help me and kyle - from painting and cleaning to bringing food and playing with Skylar... THANKS MOM! Uncle Matt came into town this past weekend too all the way from Maine and it was so fun to see him!!! I know Skylar enjoyed watching Surf's Up with him :)

I am pretty sure she's excited for her party. Skylar will certainly enjoy the change of scenery! She gets a little scared with a lot of people around, so we'll have her away from the crowd where people can visit a few at a time. All the moms (my mom, stepmom and mom-in-law) will be helping set up and decorate for Skylar's party and I am so excited - thanks for your help!!!

Here is Skylar checking out her first birthday gift from Great Aunt Vickie and Uncle Steve in Indiana - I think she liked the shiny paper, hahaha - her eyes are huge :) I helped her open it and we've already enjoyed some of the fun movies inside!

So that's about it. Stay tuned for birthday updates and pictures coming soon!!! Peace.


  1. 1st- Congrats on finally getting Medicaid- that's wonderful!!!!

    2nd- Good luck with the stroller- I hope the 3 of you will be able to get out more once it comes!!

    3rd- I'm beyond thrilled that in 2 days we get to see our sweet little angel turn 1!! What a blessing! I wish we could be there but since we can't- just know that I will be thinking about her all day!!!

    Love to everyone!!! xoxo

  2. YAAAAY! What a week of blessings my friend. Thanking God right now for His provisions - He is so faithful. Celebrating with you all =)

  3. Happy Birthday Skylar Marie Jones. :-) You are so loved little one. Love you Ashley- you are an AWESOME Mom.

  4. You don't know me but I ran across your blog and noticed it is a very special day today. Happy Birthday Skylar!! What an awesome day!! Most of us take 1st birthday's for granted but with SMA kids we don't. Have a great party!!