Thursday, May 13, 2010

A whirlwind of a week...

As we continue to be blessed by the amazing people in our lives, we remain busy...

Friday was frantic - I woke up to a barf dog. I saw him eating grass before so I knew it was coming. It was our first day out of the house since our trip to the hospital two weeks prior. We were on our way to the GI doctor - I was actually packed up and ready to go with Skylar on time! In the car, all of her equipment in tow, taking a bowl of water to Reese (who I put in our neighbor's fenced in backyard) only to find that he had escaped through a hole in the back fence... Crap! I do not have time for this... Luckily, I knew where he typically wanders off to and found him in record time! Back in the house he goes. We were still able to make it to the office building on time. I was in the process of unloading all of her equipment and realized there was no way I was going to be able to carry it all by myself because none of it fit under the stroller (which I should have tested instead of assuming I could at least fit the suction machine under there...) I somehow managed to get everything out of the car and in a manageable position and then I put Skylar in the jogging stroller (since it reclines pretty far back). As soon as I moved her to the stroller, the alarm sounded and there went her oxygen level... I spent about 20 minutes out in the parking garage where it was hot and sticky trying to get Skylar stabilized with just the suction machine. I flagged down a young guy to help me carry her stuff in and find an outlet to use her cough assist (something I couldn't use out in the garage). I sat in the lobby and called the GI office to let them know what was going on and they sent someone down to help me get to their office. Leaving the office was the same story. I dropped the cough assist from waist high onto the asphalt and heard a crack. S*#@! That thing is so heavy - I hope I didn't break it. I swore I would never go out by myself again - especially without a portable power supply and a stroller that would hold more stuff. A van would be nice too. I swung by home, said hello to a friend that had dropped by and since Skylar was in the car already, we decided to try to get to the chiropractor. I should've just called it a day. More dropping her O2 levels in the parking lot, more frantic running around trying to get all of her machines to an outlet and getting her stabilized. Thankfully, the cough assist still worked though it looks banged up some on the side (oops). I got home and got a much needed hug from my husband after a long and stressful day.

Saturday was his turn. I woke up to a pretty arrangement of flowers with a note from Skylar :) Kyle babysat while I went out, spent some gift cards we've had forever, ran some errands, and just experienced freedom. Seriously, that word was flashing in my head the entire day. An amazing sense of freedom. The sun was shining, there was a cool breeze, and I was able to drive without worrying if my daughter's oxygen was going to drop and I was going to have to cut people off to get to the side of the road and suction her out. It was amazing. It was my first real day "off duty" by myself. Kyle did well (I only got one or two phone calls) and he fell asleep as soon as his head hit the pillow. I am pretty sure he now understands why I am so exhausted even though I "don't do anything all day" and I want to go sleep as soon as Skylar's out for the night. He did great though and I was happy he got some extended one on one time with her. Skylar gave him a nice present too because I came home to a bare crib that had been stripped down and I heard the washer going... Apparently Daddy got a big smelly diaper that was a little runny and leaked in the crib, hahaha :)

Sunday we had an interesting sermon about the miracle healing of a man who was paralyzed for 38 years or so and seemed somewhat undeserving... (if you want to listen to it you can go to and check it out) it made me think about our situation and my last blog post and how no one can really predict a miracle and there's no rhyme or reason to why people get them and others don't. Anyway, it was my mom's birthday as well as Mother's day so we ended up spending most of the day with family cooking out and enjoying our backyard after church. Kyle and I were tired (combined with stress makes us a little grumpy) so as soon as everyone left around 4 or 5, Skylar slept hard, Kyle napped in the hammock on the porch, and I crashed in the bed. We woke up at 9pm, lol, and I made some phone calls to other family for Mother's Day, had a late dinner, and then got a few things done before going back to sleep. So really my Mother's Day was Saturday...

This week has been hectic as well. We had the phone consult and physical evaluation by Babies Can't Wait - a federally funded state program to help babies with disabilities get help in the home. Basically, a physical therapist will be coming to our house to help do some exercises with Skylar (not sure how often) but any little bit will help. We just have to make sure we get on their schedule first thing so they are not bringing a bunch of germs into our home.

We also had a home visit from our pediatrician last night. Skylar has been crying the past two days which is pretty serious for her. She only cries when she has a super heavy diaper or if something is hurting her... so I have been concerned I accidentally broke one of her ribs or she has pneumonia or something like that because she would only cry right before her oxygen dropped or when I moved her chest area. We went to get a chest x-ray this morning and there was some inflammation, but no pneumonia or broken bones which was awesome! The pediatrician said he thinks that the routine we're on is good and it seems that we are managing whatever she's dealing with pretty well. If it gets worse, we'll start her on antibiotics or something, but hopefully it will clear up on its own. Until then, Skylar's little pitiful cries break my heart!!!

He was impressed and shocked we didn't have home help and said that most people would've crumbled by now... Praise God for unexplainable strength, peace, and amazing people in our lives who support us. He's going to work on trying to get insurance to cover a respiratory therapist to come help me, even if just for a few hours a day. YAY! Hopefully that will work out so I can have some time to spend with Reese - our poor neglected whiny dog who just wants to play and run around all day. I'm looking forward to getting some help so I can have time to eat (and not inhale my food any chance I get in between Skylar's routine) or just do "normal" things.

Other updates: we applied for life insurance for Skylar right before she was diagnosed and finally got denied... I think they've been spending the past 4 months trying to figure out what was wrong with her - it was a long shot, but oh well. I'm in the process of trying to get medicaid for Skylar and also apply to a few other programs to get some help financially. We're starting to feel the stress with money, medical bills that have drained our savings, my car repairs, the property we own that we were hoping to build on but don't see how that's possible anymore, etc... I'll be meeting with a girl next week to finalize the fundraiser details for June and will post those soon if anyone feels led to help us out in that way (please don't feel obligated)! Random thought: Can you believe in another week Skylar will be 6 months old?! As always, thanks for reading :)


  1. thanks for updating :)
    I feel your pain. Just wait until you hear someone with a normal baby complain how rough their day was.... I've saved Nora's life in a parking lot a few times now.
    stay strong.
    Georgia may have the Katie Beckett waiver but at least they have the oxygen/vent medicaid waiver. If you have a Trilogy 100 bipap (which is also a vent) you have qualify for that.

  2. I just found your blog and want you to know that we pray often for you guys and Skylar. We grew up as family friends of the Jones'... ever since they lived in Charlotte. Me and my sister and brother played as kids with Kyle and Matthew. My mom has shared the updates with me that she gets from Denise and God has really layed it on my heart to be praying so much for you. Just wanted to say hi and that we are praying. Tell Kyle hi too, Erin (Britton) Corwin

  3. Ashley, you are doing an AMAZING job!! I am so proud of you. And even though it is very hard/stressful/exhausting right now, you are showing amazing stregth and being a true example-- a true witness of what faith in God can do!!!
    I am praying every day for you... praying for God's will--- but praying for a miracle!!

    I love you!!!!!

  4. Hey girl...just wanted to let you know Trey and I are thinking about you, Kyle, and Skylar. You're doing an amazing job loving that little girl!