Sunday, May 23, 2010

Bad news, more kind of bad news, good news and some kind of good news

Last week we showed our home twice, both times the people liked it but they were deciding between three homes, I guess ours didn't make the cut. We keep praying that someone will come and fall in love with it, we realize it's not perfect, it's definitely got that lived in feeling, but we would like to think that it would be a good family home for someone with a big family. Please keep praying with us that it will sell this week. The home we really want is contingent on our home selling by May 31st, after that we will have to renegotiate with them to give us more time. It's so hard to live in a home that you need to have show ready at any time. At least they have to give a two hour notice to show it, that helps some.

The pictures above are from Luke's Orthopedic Dr. appointment at Children's last week, can you tell we were bored?? That is where the good news and kind of bad news comes into play. The first Dr. that saw Luke said that the only surgery that he would suggest would be one that would permanently bend Luke's knee's by cutting some tendons in his quads and reconstructing his knee pads. I was feeling a bit stressed after hearing that and mentioned that I wouldn't want to do anything permanent at this time, that is when he suggested doing some x-rays. The x-rays brought some good news along with another Dr. the one we were supposed to see, he said that Luke's knee's and hips bones actually still look good, they are both rounded, quite often in kids like Luke the bones get flattened and that is when they have a challenge fixing them. He said that he felt that if we could get Luke's muscle tone issues dealt with either by upping his oral Baclafen or putting in the Baclafen pump, if that didn't work, he felt like we could still get those knee's bending without any surgery. That has been our goal recently and we really need your prayers that God will miraculously reach down and touch Luke's legs or He will help the Baclafen start to do it's job.

The really bad news came on Tuesday morning when we got the results from the x-ray of his lungs that I had taken him into to get on Monday. You see last weekend Gordy had a rough time with Luke, I had gone away for two nights with some friends for some much needed R & R, that means some sleep and while I was gone Luke had a terrible weekend. He was very congested and had a high heart rate and needed to be on oxygen most of the weekend. I decided that since we needed to get a follow up x-ray done before next week, when I take him back to the Pulmonologist that I might as well get it done to see if he had anything brewing in his lungs.

The kind of good news was it didn't look like he has pneumonia, the really bad news is that his lungs have not improved and he still has the atlactis, which means his left lob is still collapsed. I was devastated when I heard this because I know Luke can't continue to be this way and I'm not sure what the Pulmonologist will say next week when I take him in. I'm not trying to borrow trouble but I do know that the horrible "T" word has been mentioned as one of the ways of getting rid of this problem. For those that don't know the "T" word is trache, I don't feel I can go back to that again. PLEASE pray with us that when I take him in on June 3rd he will be miraculously better. I realize that I've asked you to pray for two miracles in this blog posting and I know that I serve a big God who can answer these prayers, so I want to thank you in advance for lifting these prayers up to God for us.

So in a nutshell this is what I'm asking prayer for:
Luke's legs to bend either miraculously, which is what I'm hoping for or with the oral baclafen, not having to get the pump.
Luke's EEG is scheduled on June 1st, he will be spending 24 hours in the Hospital, please be praying that he will have no seizure activity show up.
Luke's collapsed lung to get better and for his appointment with Pulmonologist to go great on June 3rd.
Also for Izzy, she had surgery on her hips on Friday, please pray that she will have a speedy recovery and will get to go home from the Hospital tomorrow.
And last but not least for our house to sell this week.

Luke's Mommy Suzi

Thursday, May 13, 2010

Wow, What a Week!

So much has happened since the last time I wrote. Perhaps I should start with the latest happenings and work my way back in time. Yesterday I got a call from my dad saying that my sister Jill and my mom had been in a car accident. At first we thought it wasn't too bad, but the more we heard about it, it kept getting worse all the time. Jill was driving my Mom's car on the way home from a special birthday outing when all of the sudden a car came straight at them in their lane, to try to avoid the car my sister pulled the car off the road into a deep ditch, the car hit my parent's car on the driver's front side and it ended up flipping over onto it's side. Jill was able to get out of the car with some help from the neighbor across the road and then they had to cut out the front windshield to get my mom out. They both rode in an ambulance to the nearest hospital. Long story short they both ended up being fine, except for some bruising of the lungs for my mom and some soreness for both of them. It is a huge answer to prayer, because as you can see the car you would have to think that they would of both been far worse.
As mentioned in my last post we've had our home on the market now for just about 3 weeks and we had one offer that fell through, we showed it again today but still no more offers. It has been challenging and stressful to keep the home show ready at all times. The home we are wanting to move into is contingent on the sale of our home, we have until June 1st to sale our home before we will need to renegotiate with the sellers for a new contract. I was really beginning to get stressed out about all of this on the way home from taking my dad to get his car cleaned out today, when I had a really good prayer time on the way home. I once again realized that I have no control over when our home sales, only God does, I just have to trust Him to know that He has a plan and He will allow our home to sale when it is his perfect timing.

Here I am with my Daniel Boy on Mother's Day, standing in front of our home

Here I am on a walk with my family on my birthday

I celebrated my birthday two weeks ago and guess what I got a new camera, so my goal in life to is post more pictures more often, so today you will be seeing all kinds of pictures. I had a great birthday, I feel so blessed:-}
Luke getting kisses from Auntie Jill
Luke getting lovies from Zeke

Luke getting a kiss from Daniel

Lily giving Lukie some more kisses

Luke has been doing pretty good lately, he seems to finally be getting over this pneumonia he's been dealing with for so long. I ended up taking him into the Neurologist a week ago, he seems to be having some seizures lately and a had a few scary ones about a month ago. He is scheduled to have a 24 hour EEG done on June 1st. I'm not looking forward to this stay as it will be videotaped the entire time, but I know that we need to do this so we can get some answers to what has been going on lately. Luke seems to be more stiff lately, it really doesn't seem possible that he can be any tighter than he usually is but he has been and I'm not sure why. I will be taking him up to Seattle Children's Hospital next week for an appointment with an Orthopedic Dr. that I've heard is great to see what he thinks we can do for his knee's and hips.Luke's OT has been working on trying to get Luke to communicate better with us and also trying to get him to not be so hyper sensitive. We have decided because it is so expensive to take Luke to two appointments a week we are cutting it down to just one with the OT for awhile so we can concentrate on these very important issues.
Here's Luke in the balls with his OT

Once again I've stayed up way too late, so I bid you farewell my friends,
Luke's Mommy Suzi

Saturday, May 01, 2010

A Week Full of EXTREMES

Wow, what a week of Extreme's: Extreme Joy, Extreme sadness, Extreme hope, Extreme hopelessness, Extreme goodness, Extreme heartache, Extreme anticipation, Extreme disappointment, Extreme stress, Extreme blessings. I'm ready to have this extreme week over.

I began the week with much anticipation and anxiety of what Luke's new Dr. would say, wondering if she would have the much needed answers or solutions on ways that we could get Luke's leg's bending again and help for his extreme muscle tone issues and left her office with more questions than I did answers. It was not the Dr.'s fault for the many questions and feeling of extreme desperation and despair when I left the office, it was because in Luke's case there seems to be no answers. The Dr. did explain that because of Luke's extreme damage to his brain during his near drowning accident that kids like him don't really have many answers to ways to help with the struggles they often experience with their extreme muscle tone issues. The solution she gave was continue to increase his baclofen, which is a muscle relaxant until we see him begin to really relax or until he becomes so drugged that we don't like the reactions we are seeing him have to the drug. Often kids like Luke need too much baclofen to make them relax and even though it really does help with the muscle issues, it's not good for the cognitive connections we are trying so hard to get him to make. Our other option is a baclofen pump, which is not always the best choice either, it creates a whole net set of challenges.

I left the office with a deep sadness and depression that day, I still can barely talk about it without tearing up. You see we continue to travel on this journey holding on tightly to hope and at times it seems that the hope we hold onto so tightly becomes almost impossible to hold on to. If you know me at all you must know that I don't like crying, I never have, it has always been embarrassing and non productive to me. I would rather come up with solutions and see the good side of situations rather then the impossible sides, I consider myself to be a pretty positive person most times. But this week I've felt an utter hopelessness that I haven't felt, well ever, crying more this week than I have in years. I still don't know if we should go back to this new Dr. or the Dr. Luke had before. You see the reason I was trying a new Dr. is because I didn't believe that there were no answers to Luke's tone management as his other Dr. was telling me.

On top of the stress of the difficult choices we now need to make for Luke, we have had the extreme stress of having our home on the market along with the stresses of making an offer on our new home. That's where the joy and goodness come into play for the week. The offer we made on the new home was accepted and we are going forward with hopes of living there one day. Now all we need to do is sell our home and that is huge, but not too huge for GOD.

I celebrated my birthday yesterday, it was a good day, but even on the best of days the sadness of hopelessness still lingers in the back of my mind. I'm praying that God will bring me out of the pit of hopelessness soon. I know, beyond doubt that God has a answer for Luke's muscle tone issues, I know that He could reach down His healing Hand right now and bend his knee's, I know that it's easy for Him to make a new brain with new connections, that is what I have to tell myself everyday, I have to believe it without seeing it, because that is what God desires. He desire's my trust and hope when I don't feel like it, when I can't see it and when I feel like nothing will ever change. I've had a week of crying now it's on to find some new answers, even if those answers are God's still voice in my head saying "trust ME, Sue, I've never failed you before and I'm not going to start failing you now."

Don't feel sorry for me, I don't want pity, but I would love your prayers. Prayers for Luke's legs to bend, for Luke's brain to heal, for Luke's muscle tone issues to get better, for direction in finding answers to impossible questions, for our house to sale, for God to lift off this dark cloud that I'm under, for me continue to trust Him even when I don't see any answers concerning Luke's health, for Luke's pneumonia and lung issues to heal and of course for strength to continue on the journey I never asked to go on. THANK YOU.

Love in Christ,
Luke's Mommy Suzi