Monday, April 30, 2012

Feeling blessed today to be getting my wish for my Birthday this year, SLEEP:-)

Today is my birthday, yep I'm turning 48 years old today:-) There is a part of me that really feels like I'm 48 years old and then there is another part of me that feels like I'm still in my twenties, though I sure don't want to go back there again. My mom asked me the other day, "Sue, what do you want for your birthday this year?" After thinking about it for a minute the only answer I could come up with is SLEEP, that's really all I want, a full night of uninterrupted, no alarms, sleep. I often think if I could just get a full night of sleep I could, run faster perhaps break my 12 minute mile for more than 3 miles,  I could wake up feeling refreshed, I could accomplish all the things that I have on my "to do list", I could lose a few more pounds, because you know that sleep is important to weight loss, I could . . . the list could go on and on. I've been so tired lately that I've woke up a few time recently in a panic because I thought that I had forgotten to do something, it's so real in my mind that I get out of bed to see if someone is coming over or I'm check my phone to see if I've missed some calls and to check my calendar. I also fell asleep recently after taking Luke to his PT appointment we were going to go shopping at Costco, well I thought since he had fallen asleep I would close my eyes for a few minutes, I woke up 20 minutes later confused to where I was and what I was doing. Kind of scary, sleep deprivation can do strange things to your mind.

I'm excited to say that I'm getting my wish this year for my birthday! You see Gordy has to go to Las Vegas this week for business and we figured since he has a hotel room all paid for, along with his flight and food, I could use our flight airline miles and get a free trip to join him, except for the cost of my food. To be honest I'm not all that excited about going to Las Vegas, I don't gamble, drink or really enjoy the shows, what really excites me is the fact that I will be able to sleep each night without any alarms going off or waking up to Luke coughing and gagging in the morning. I am looking forward to some time spent by the pool, catching a few rays, along with the fact that I won't have anything pressing that will need to be done for 3 full days. Also hoping to meet Cierra, she has Austin who had a near drowning accident a year after Luke, our stories are so similar in that our boys were both 17 months old, when they went from being healthy precious children, who were walking and talking to being little guys hanging on for their dear lives.

 Gordy and I sharing a huge delicious mud pie with our good friends Juan and Yoli, they took us out for my birthday, yep I'm blessed:-)

What I'm really hoping and praying is that Luke will do good this time while I'm gone, last time he decided to get sick the day I left and then continued to be sick for weeks to follow. He's been doing so good lately and I'm hoping and praying that he will stay that way for the next few days. It will be so nice to have this week off before we have a week of lots appointments next week, Luke is going in for a baclafen pump trial once again. Baclafen is a muscle relaxant and we are hoping that by putting it straight into his spine, which is what the pump would do he could enjoy the benefits of the medication without the nasty side effects of it putting him to sleep all the time.

PLEASE PRAY: For Luke to do great while we're gone
For the kids to be okay, they are sad to see us go.
For Amy as she is covering all the nights while we are gone.
For my mind to shut down at night so that I can get some really good sleep.
For safe flights for Gordy and I, we are flying at separate times.
For Luke's baclafen pump trial to go good next week.

Thank you and God bless you,
Luke's Mommy Sue

Thursday, April 12, 2012

Blessed Beyond Belief - God is Good ALL the time, On the Days that seem impossible to get through and on the days that are full of amazing blessings.

Here are my sweet children on Easter

What a wonderful blessing to see our family grow:-)
The last two days have been full of amazing blessings from the Lord. Yesterday we had some great news concerning some financial assistance that we've recieved from the hospital, Luke's bills we had were paid for, which was a wonderful blessing. Then today when I called to pay off the remaining bill that we had for Luke's vest percussion machine I found out that after our insurance company paid off their portion we only had a 1/3 of what we thought we going to have to pay. We are so thankful to God for His amazing provision in paying off these huge medical bills for us.

Another piece of great news that we got yesterday was that I found a young lady that is willing to come and help out with Luke's care a few mornings a week. My sister Cindy has been faithfully helping 2 mornings each week with Luke's care for years now, to say I'm thankful for her constant help would be the biggest understatement of the year. Then this past year Natalie has also been helping two days a week. Natalie is now over 6 months pregnant and it is becoming very difficult for her to lift Luke in and out of the bathtub, I've been asking her for a few months if she was still able to do it, I didn't want her to get hurt or hurt the baby, but she was comfortable with it until just recently. I have been praying for God to fill in her spot and He is so faithful to direct me to a young lady that has babysat for Luke a few times in the past. Her name is Alexis and she only lives about 2 blocks away, she was just as excited to be asked to help us out, as we were that she is so willing to bless our family. She will start out with just a few hours each week in the morning, but will increase in hours when Natalie has her baby, she is willing to be very flexible in her hours and is a HUGE answer to our prayers.

Isaiah celebrated his birthday after Easter dinner with the family. Once again we begin the teen years with our children, we are blessed to have such wonderful kids.
Luke hanging out with dad at Isaiah's birthday party
Josh and Isaiah at the beach
Natalie and I getting blown away at the beach
On Isaiah's birthday spent the day at the beach,we were blessed with a beautiful sunny day, which is not usual for Washington this time of the year or any other time of year for that fact:)

Tuesday, April 03, 2012

Two sick kids + Two good reports = A very challenging day of mixed emotions

My challenging day really began yesterday after working out in the yard for a few hours. Isaiah, who I thought was just slacking off told me that he had a horrible headache and then when I came in an hour later to hear him hacking away felt really bad. You see he had just helped me cut down some of the branches that we've had hanging over our fence for the past month, so that I could mow our yard. I didn't realize how crummy he was feeling until I heard his horrible cough. Then a few hours later at about midnight Amy told me that she was feeling sick to her stomach and a few minutes later starting throwing up, which lasted for a few hours until she couldn't even keep water down. Needless to say I didn't get a lot of sleep as I laid in bed and listened to her throwing up for a good part of the night.

I was up very early today, bearly able to open my eyes from the exhaustion of only getting a few hours of sleep, but knowing that I immediately needed to get details taken care for the day since Amy was sick and I had to take Luke to two appointments starting at 9:30 am. I am grateful to say that my sister Cindy came over earlier than usual, gave Luke a bath, did his vest treatment and fed him, while I got on the phone to ask our wonderful friend Brenda if she could come to our house for her reading class instead us going over there, thankfully she was willing to do that for us today. After that was done I had to figure out all the details for what Amy had planned for the day, she had organized a work day at our church to paint the downstairs, thankfully once again my sister Cindy volunteered to take the paint over to the church and open it up for the workers, my wonderful friend Yoli volunteered to make the sandwiches that Amy was going to take for all the workers and Gordy worked from home so that he could help watch the kids.
Luke loves watching fish swim:-)
I got to Luke's appointment a few minutes late, thankful that the Speech therapist was still finishing up her previous appointment. I was hoping that she could help us figure out a way to help Luke get better about communicating what he wants instead of having to yell all the time. She was very pleased to see the fact that Luke will follow directions when he wants to, making toys work as he would press down on switch buttons. She noticed that from the time you ask him to do something it usually takes him about 30 seconds to respond, but he almost always does within that time period. We are going to start with a very simple clear laminated plastic sheet with a green yes and a red no on it and then I will ask Luke to look at what he is wanting, whether that's watching a movie or listening to a book. I'm really hoping this will just be the beginning of him being able to communicate with us.

We went straight from that appointment to see his pulmonologist and we were doubly blessed by the fact that his Dr. said that he thought that Luke was looking and sounding good today. He thought that perhaps what the radiologist saw on the x-ray was from some previous pneumonia, because he agreed with me that it doesn't seem like Luke has pneumonia right now. We are still going to proceed with trying to get a cough assist machine, in hope that it will help Luke get more productive coughs happening, hoping that our insurance company will okay it without a lot of hassle.

In trying to be quick about loading up Luke into the van in the pouring rain after our appointment I accidently pulled the back van door down on my head, needless to say I was suffering from a horrible headache, which made the drive home miserable. It finally started to subside after I took some ibuprofen, thank goodness.

I hope and pray that when I wake up tomorrow that Amy will be feeling better and that Isaiah's cough will be better too, though if it's not I think I will be taking him to the Dr. as it's been sounding nasty for a few days now. Please join with me in praying that no one else will catch Amy's nasty flu bug or Isaiah's cough.

I saw this saying on face book this evening and thought it was a very thought provoking quote. I'm not sure it's biblical, but it sure seems to be true in my life lately. I find myself asking God "WHY" alot lately, not a good place to be I know, for when we ask why, we are not trusting. I have been struggling lately with how "unfair" life can be, there I said it outloud for all to hear, now you know how I really feel. Okay enough said, I'm really tired so I'm going to go to bed. GOOD NIGHT.

Love in Christ,
Luke's Mommy Sue