Wednesday, May 25, 2011

Luke was finally approved to get the "Vest Machine" and it has been making a huge difference in his life, PRAISE GOD!

Sorry it's taken me so long to update Luke's blog, some days, no I mean weeks, no I guess I really mean months are so very busy. Even now I really should be in bed, but I knew that I couldn't go another day without sharing at least a few words with y'all. I actually sat down a few weeks ago and posted a blog post and then for some reason the computer lost it, can you say frustrating??? It was actually the night before Daniel, Sarah, Natalie and I walked a 5 K to raise funds and awareness for stopping human trafficking. The picture below is right after we finished the walk. It was the day before Mother's Day so after the walk Daniel and Sarah took Natalie and I out to there favorite little Thai restuarant in Seattle, they treated me to a wonderful lunch. We then ended the day playing a game of Settlers of Catan, it was a great day: -)I've been wanting a picture of all the kids lying in a circle for a long time and on Mother's day I talked the kids into laying on the ground for me to take one. I'm such a blessed Mama!
After sharing a wonderful lunch with my parent's, the Rodriguez family, a good family friend Mary and her daughter Rachel, plus a few others, we went on a walk to the Chamber's Creek Park. Even though it was a cloudy day, we all enjoyed ourselves at the park. The kids had blast looking for crabs under the rocks, some of them even got brave enough to pick some of them up.



Luke has been doing so good, Praise God. Our insurance company finally okayed him getting the vest machine. He was quite "junky" the first few days after getting it, but he is now doing so much better during the day and his nights have been amazingly better. We have been okayed for the vest for a month at which time they will re-evaluate Luke's progress to decide whether they will let us keep it. I have to believe that when they hear about how great Luke is doing they will decide to let us keep it here. Even though our insurance company will be paying their part it will still cost us about $150 a month, they are renting it to own it eventually. Luke loves the machine everytime we put it on him he get's such a nice smile, he even makes noises with it sometimes.

I did say I've been busy right?? One of the many things that I did was finally get Luke and the other kids into the dentist. I'm so thankful to say that Luke's teeth look great along with no cavaties for the kids. I can add Dental Hygenist assistant to my list of many different jobs that do on a daily basis, I was there to help keep Luke's mouth open and suction as needed. It was a bit stressful to be honest, but not as stressful as it was for Luke.Oh well, so much for keeping this post short, I guess it's just not possible for me to do that and even though I have so much more to share with you, I'm going to log off and go to bed. Once again I have a very full day tomorrow.

Love in Christ,
Luke's Mommy Sue

Here's a video of Luke hooked up to the Vest Vibration Machine. It's hard to believe a little machine like this can cost $16,000, yes I really did mean to say sixteen thousand dollars. It's going to take us a few years to get it paid off that is of course if our insurance company decides to let us keep it, please pray they let us keep it.

video

Wednesday, May 04, 2011

The Good News vs. The Not So Good News

The Good News: I took Luke into his Pediatrician today and found out that his lungs actually sound good. Wow, I wasn't expecting to hear that, oh me of little faith.
The Not So Good News: Looks like Luke has his first official ear infection, along with some allergies going on right now. Which we think are the reason for all the congestion he is having, therefore making his O2 numbers low, along with the constant suctioning we've been doing for the past week.

The Good News: The lab techinician was able to get a good vein on her first try, she took 3 vials of precious blood.

The Not So Good News: I'm anxiously waiting to hear the results, wondering how his CO2 numbers will be along with his other numbers, hoping to be surprised.

The Good News: The Dr. took a look at Isaiah's arms today and prescribed a new kind of antibiotic cream, along with saying that it's good we have an appointment with specialist in a few weeks. What a blessing to have our great Dr. take a few minutes to look at Isaiah's arms, even though it wasn't his appointment.

The Not So Good News: Isaiah's arms still look horrible, he just can't seem to leave them alone, therefore they are not healing, please pray for them heal once and for all.

The Good News: I was able to get two nights of uniterrupted sleep last weekend when I went to visit my sister Lori and her husband Lonnie. I went over on my birthday, last Saturday and came home on Monday evening. It was so good to see them and enjoy the sunshine.
The Not So Good News: It was the only full two nights of sleep I've had all week long, last night being another nightmare night. I ended up sleeping on Luke and Lily bedroom floor as I just didn't have the energy to get up to go to my bed since I was having to suction him about every 15 minutes to keep his heartrate down and his o2 numbers up.

The Good News: I had a wonderful birthday! Our family went out to dinner at the Spaghetti Factory and then came back home for cake. I was blessed with some new shoes and some other great gifts.

The Not So Good News: After having such a great evening with family, I spent the rest of the night suctioning Luke, only got a few hours of sleep, thankfully my family let me sleep in.

The Good News: I lost another pound, down 26 pounds, half way to my goal.

The Not So Good News: Luke still weighs 47 pounds, he's been holding steady there for a long time. He's having a hard time gaining weight because he's been expending so much energy breathing lately.

The Good News: We applied and recieved financial aid from our local Hospital, which includes all of Luke's specialists and therapists. We will now actually get 55% off any amount that we have to pay out of pocket, which includes our co-pays, woohoo!
The Not So Good News: In order to have our bills reduced I have to call them everytime we get a new bill so that they will take off the amount, therefore I have spent many hours on the phone getting all Luke's medical bills taken care of, another draining task to fill my day.

The Good News: Amy and her very good friend Nicole took off to the Oregon coast to spend a few days on vacation, I hope and pray they have a great time and stay warm.

The Not So Good News: Amy will not be here to help the next few days, so if Luke has another bad night, which I'm praying he doesn't I won't have her here to help out in the mornings.

The Good News: I'm thankful that even though I'm absolutely exhausted beyond comprehension, God's never ending supply of strength is right there to help me get through this challenging time.
The Not So Good News: Sometimes because I am so exhausted I find myself in tears often, doubting whether God cares or even hears my pleas for help.

The Good News: I am so blessed to have such a wonderful family, great friends and all you out there in blogland that faithfully pray for Luke and our family, THANK YOU! We sure do apreciate your faithfulness.

Love in Christ,
Luke's Mommy Sue