We continue to rely on God's gift of perfect peace

I was going to begin this blog by saying we've had a busy few weeks, but then I guess I say that just about every time I write, so I'll skip saying it for now. Luke has been doing okay, though he has been sick off and on these last few weeks. I'm not sure what is going on with him, he just seems to be more congested at times and has needed a little bit of oxygen every night lately.

I took Luke and the girls to visit my sister, Lori and her husband, Lonnie in Eastern Washington last weekend and he got really sick on Sunday. I knew he wasn't doing well so I hooked him up to the oximeter and sure enough his heart rate was up to 180 and his oxygen levels were very low. I began oxygen and finally had to take it up to 3 liters to get him into the low 90's. We prayed for him and I immediately gave him tylenol, within an hour his heart rate was coming down, but he continued to be on oxygen all day. I was able to turn it down to where he was only on 1/4 of a liter when he went to bed that night. It was another one of those roller coaster ride days for me, I had so looked forward to going to church with my sister in the morning, but ended up staying home with Luke. Just as Lori was leaving she put on a CD for me to listen to and the first song I heard was Blessed be the Name of the Lord, it was God's way of telling me once again to bless Him in the good times and the hard times. What I had looked forward to as a relaxing weekend ended up being at times quite stressful. I had let Natalie drive over and back, she's still learning to drive and needs more experience until she ready to get her license, she did an awesome job, but it is stressful at times teaching someone how to drive. On the way home what usually would only take 4 1/2 hours at the most to get home ended up taking 8 hours because we got stuck behind a horrible accident. Needless to say we were all very happy to get home!

I took Luke to HBOT and PT on Wednesday and his legs are looking better all the time. His PT had him sitting and then standing and the bend in his legs is looking so much better. Luke continues to be more alert and responds to touch more and more all the time. I was playing with him last week, on one of the hot days and put a ice bag in his hand, he did not like holding it so I told him to open his hand and let go and he did this about 4 or 5 times. It is so good to see him responding more to commands and finding him more responsive to the touching of his hands and feet. He smiles all the time when you play with him, he especially likes to have his legs and hands moved very quickly.

Some specific prayer requests for Luke at this time are that he will continue to get a better bend in his knees and that all of him will become more flexible. That he will continue to gain better control of his neck muscles so that his head will not fall so easily. Also that we will be able to figure out what causes him to become congested every time he eats and that he will not have anymore reflux problems. Last but not least that whatever is causing him to have this extra oxygen each night will be cleared up once and for all.

Please also keep us all in prayer as this time of the year can bring back so many memories. I find myself thinking about how different our lives were two years ago and though I am extremely grateful for the progress that Luke has made, I still grieve the fact that he has had to suffer for these past two years. Sometimes the stress of taking care of Luke with alarms going off at all hours of the night, making sure he gets all this meds and feedings on time each day, getting him to his appts., making sure all the other kids don't feel less important, never feeling like I can get all the things I need to get done in a day done, take a toll. I know that God is my refuge and strength and I do go to him on a daily basis, it is only because of His faithfulness that I'm able to go on somedays. Remember, you to can go to the Heavenly Father and find perfect peace to get through your toughest days, He loves you so much and is just waiting for you to ask Him for help.

May God bless each and everyone of you!

Love in Christ,
Luke's Mommy Sue