Saturday, June 20, 2009

We've been on the Luke Roller Coaster Ride again this past week! Hoping to jump off it today as we go camping for the week

I'm going to try to keep this short as Luke is yelling at me to come get him out of his bed! Luke has been sick off and on all week long, I got a call from Gordy last Monday saying that he had a very rough night on Sunday night, but as the day progressed he seemed to get better. It was so hard being in GA hearing that he was not feeling well as there was nothing I could do being so far away. He continued to have some good days and bad days all week long it really was a huge roller coaster ride. I finally took him to the Dr. yesterday and after listening to Luke's lungs he sent us over to radiology for an x-ray. The Dr. didn't think Luke had pneumonia after looking at the x-ray, but then after being home for about 2 hours we got a call saying the Radiologist thought that he did have a bit of pneumonia so we should start the antibiotic we had picked up earlier.

You see we have been trying to leave for a camping trip since Thursday but we had some problems with the trailer refrigerator so we were unable to take off that day, I debated about taking Luke into the Urgent care that night because I knew something just wasn't right with him. Needless to say very early Friday morning he began to alarm with a high heart rate, I took his temp and it was at 102, I knew at that time I would be calling the Dr.'s office as soon as I got up to make an appointment. Thankfully they double booked the Dr. and got him in at 10:20. Gordy and I decided that he should just go ahead and take the rest of the kids to leave and set up camp, that I would follow behind if Luke was doing well enough. After getting home from the Dr.'s office yesterday I just felt like we should wait one more day before we leave to be sure that Luke would be healthy enough to make it through the week. It was a very difficult day and decision as I was completely torn in two as I so wanted to be with the family in Oregon, but knew I needed to stay home with Luke, reminding me once again of this teeter toter our family rides on each and every day.

I do want to tell you about the conference in GA, but I will have to wait for another day as I need to get Lukie up, bathed, fed and ready for the day so that we can take off her ASAP to meet up with the family today. Would you please be praying for Luke to stay healthy and for our family to have a non-stressful time this upcoming week. I really feel like we need a week full of laughter and fun to help get rid of some of the stress that we've been dealing with these past few months that have been full of Luke sickness and wedding plans.

God bless y'all,
Luke's Mommy Suzi

Friday, June 12, 2009

Here's the latest news!

I'm sitting in the Portland, OR airport right now waiting for my flight to leave for Atlanta, GA. Not a lot of people including some in my family didn't know I was leaving today, that's because it all came about rather quickly. I had heard about a conference for Mother's with brain injured children happening in Atlanta about 2 months ago, but never thought I would be able to go until I received an e-mail from another mom who said that they were trying to get people free flights and free hotel rooms. I began checking into it and found out that the flights were only for connecting states, so I started looking for free mileage flights and found one available. I'm looking forward to meeting with other mom's and hearing their stories of what they have found works best for their children and just sitting with them and being able to relate to what they are talking about since we are all traveling the "same" but I'm sure different road. Please be praying for safety as I travel and for those at home.

Luke is doing better the last few days, for awhile I wasn't sure if we were going to be able to go another day without his one muscle relaxant medication, in fact the Dr. prescribed it again in a smaller amount hoping that it will be easier on him that way, then we hope to wean him off both if we are able to.He definitely has gotten a lot more verbal lately and is so much more alert now that he is not drugged all the time, it's such a fine line between being drugged and finding what will help with his extreme muscle tone issues.

Last night we all went to the last YMCA Homeschool Choir Concert, our wonderful choir director Sue is finally moving on to other things. It's so hard to have something that you've been involved in for 11 years end but as I told her last night there really is never a good time to stop something you love and enjoy so much. Luke seemed to really enjoy listening to the kids sing and stayed awake until about 10:00 p.m. which is of course way past his bed time.

Natalie's wedding plans are coming right along, there are so many details, but I think we've got the biggest of details finalized now we just need to get the million little details done. Amy has been keeping busy, she is finishing up her school year at the church and planning out the summer of activities and classes for the children's ministries at our church. Isaiah, Ezekiel and Lily finished up their school this week after our final YMCA Homeschool PE picnic yesterday. Daniel's web design business is taking off and he having to quit the job he had for a short time to work full time for his business again, it really is a blessing from God that it's doing so well. Gordy is working hard at REI, but is finding time to go golfing a few times a week. We are all looking forward to going camping at the end of next week, it will be so nice to have some family time.

I would love to hear how y'all are doing? What summer plans do you have? And of course if you have any prayer needs I will promise to pray for them if you share them with me.

Love in Christ,
Luke's Mommy Suzi

Monday, June 08, 2009

A Peek Into Our Crazy Week!

We took another ride on Luke's roller coaster ride this past week. The only way that I get through weeks like last week is by hanging on tight to my Precious Father's BIG hand!

Monday was a very busy day, it began at the Dentist with myself, Isaiah, Ezekiel and Lily getting our teeth cleaned. Natalie brought Luke to me to take from there to his Pulmonologist appointment. It was a follow up appointment after Luke got his tonsils out, his Dr. said that Luke is doing pretty good, he is basically past the most dangerous part of his life since his airway is getting bigger all the time. Unless Luke comes down with a horrible pneumonia he should probably live to be 20 to 30 years old. Wow, what a huge statement to make, of course he did mention that he realizes that only God can know for sure, he is a Christian man and knows that God is the only one who can ultimately decide that for sure.

Luke getting a breathing treatment at the Pulmonologist Office
Tuesday started out with lots of laundry and then I called my sister Cindy to see how it was going moving her son Joseph and his wife Gina into their new home. After talking to her I realized that they needed help so I jumped into my van and drove 2 hours down to Vancouver, WA to help clean their apartment and take a few loads of stuff over to their new home. I got home that night around midnight, finally got to bed to be woke up by Gordy who had scratched his eye and was in horrible pain all night long.

Wednesday I thought for sure this would be a day that I could stay home and get caught up on some major details around the home, but not to be. I ended up taking Gordy to the eye Dr., he found out that he scratched his cornea and would not be able to put his contacts back in for at least 4 to 5 days. Without his contacts he is legally blind, therefore is of course unable to drive. After getting home I only had a few minutes before Natalie and I had to leave for our appointment with the wedding coordinator at the church that they've decided to get married at. The date has been set it is going to be September 26th at 1:00 p.m. We've gotten a lot of the details done, but we still have a lot to do.

Thursday was another day of appointments for Luke, he saw his OT at noon and then he had an appointment to see his rehab Dr. at 1:30. We decided that since the muscle relaxant medication that Luke has been on has not worked the way we would of liked, we are going to wean him off of it. It was causing him to want to sleep a lot more and looked drugged all the time, he was also losing his head control and just wasn't seeming like our Luke boy. We finally decided to schedule a date for a Bacalafen pump trial. This was a road I didn't want to go down, but alas Luke's muscle tone issues have gotten worse and we need to figure out how we can help him the best way that we can.

Luke getting adjustments to his wheelchair/stroller at the CTU

Friday began with school, got the laundry going, a few chores and then I took off to visit a friend of mine in the Hospital. Her daughter Emily, who needs lots of prayers right now has been in and out of the hospital for the last few weeks, she is having feeding problems, her body is not letting her accept her food without much pain and throwing up. Please be praying for Emily to get better and for Michelle her mom to have her strength and joy renewed. If you want to keep up to date about Emily's prayer needs you can check out her blog, The Tender Scribe, to the left under blogger friends. On my way home from the Hospital I locked my keys into my van while filling up with gas at Costco, had to wait for 30 minutes for Amy to come with an extra key. Shortly after I got home Amy and Natalie took off for a Youth Leaders retreat.

Saturday was the day I was sure to finally get caught up on the laundry, which I did get it all washed and dried but still have not finished folding and putting it all away yet, oh well it's a losing battle. Later that afternoon we took the kids to the Hands on Museum and then over to my parent's home so that we could take a walk with them on the wonderful trail near their home.

Sunday was a good day, it began by being quite late for church, Gordy got called to work but at least me and the kids were able to go. After church I fed the kids and then Gordy and I were able to get away for a little bit of time for lunch and a little shopping. Later in the day Amy and I went down to see Daniel, she had never been to his home and it's been way too long since I had been there. We went for a beautiful walk with him and his girl friend Sara, up, up, up, the mountain behind his home, it was breathtakingly beautiful.

Here we are on our walk up "Daniel's Mountain"

Monday was a great day, I woke up to sunshine and thought what a perfect day for a field trip to the Mountain. I loaded up the van with the kids and we took off to Mt. Rainier. It was such a wonderful trip there, so beautiful. We took a short little hike around one of the many trials, we all had a great time, though Luke was not very happy on the way home. He has been much more vocal and seems to be in lots of discomfort since we've cut out one of his muscle relaxant medications. The Dr. told us we could just stop it, but I think that we probably should of weaned him off it. It has been so hard to hear him crying and see the tears in his eyes, if he is not doing better by tomorrow I will be calling his Dr. to be sure that he told me the correct information about weaning him.

Here we are at Mt. Rainier

Wow, didn't mean to write a book, sometimes I get carried away, sorry about that. I know that if I would just sit down more often these posts wouldn't get so long. Hope you enjoyed your peek into our week!

Love in Christ,
Luke's Mommy Suzi