Wednesday, August 29, 2007

Eye appointment

Luke had his opthamologist visit this morning. I must say...the doctor was great and hopeful. There was bad news and good news (most was good.) The good news is we now know why Luke's eyes have not opened. The bad news is his third cranial nerve is either damaged or paralyzed. The other good news is there is still hope that the nerve could wake up. He wants to give it another month then see Luke again. If the nerve does not wake up, then there are 2 surgeries that can be done to help Luke open his eyes and see. Basically, the third cranial nerve is responsible for opening eyes, constricting pupil, and also movement within the eye, none of which Luke has. There are no exercises that can be done to get it to function, it is just a wait and see game. The oxygen therapy can help damaged nerves though. God has been good so far, and it seems most of our miracles have come just in the nick of time, so his next appt is 9/26, so maybe on 9/24 he will open his eyes (or sooner:)
As for the EEG results, the frustration continues with the neurologist. He called back last night after 9 when I had turned off my cell phone. He left a message that the EEG was still slow (didn't say whether or not it had improved over the previous one,) and there was POSSIBLE seizure activity. Then went on to say if he is on anit-seizure medicine leave him on it, but if he is not no need to start him on it???? So basically, he didn't even bother to look up Luke's chart or history to know he is on anti-seizure meds. I did leave a message today hoping to get some more info, but was told he is getting ready to take another vacation Thursday. The good news I got is he is retiring, so we are hoping to get Luke into the guy who is taking his place. If anyone in AZ knows of a great neurologist, I would love to hear it. I just think it is so amazing as soon as we tell anyone Luke's neurosurgeon is Dr. Manwaring everyone says he is in great hands ..why can't there be more doctors out there like him? So please continue prayers...believe...and one of these days Luke's eyes will open:)

Friday, August 24, 2007

Slow and Steady...

Well we started the oxygen therapy again this week...I even went in with Luke twice this week (my first time ever.) The pressure on the ears wasn't as bad as I thought it was going to be...or maybe I had just built myself up for more.
We had our first follow-up interview with the NACD since we have started their program. They were very happy with the progress we have seen with Luke, especially in regards to eating. We are now able to give him just about anything to eat, and he can swallow it fine. To realize how truly amazing this is, I have say, when we were at the Copa, some of the doctors told us Luke may not have a cough or gag reflex to be able to eat. Praise God because he is eating great!!! In fact, we have cut him down to only using his feeding pump at night to catch him up on calories. I am hoping when he goes back to see the pediatrician in Sept. she will tell us we can get rid of it completely. The NACD is going to give us a updated speech routine for Luke to get him to work on closing his mouth and drinking from a straw...this will also be the first step to getting him to speaking again. Another thing with his feeding, if I put a cracker or even the spoon with food on it in his hand, he will bring it up to his mouth. Sometimes he may not get it right in his mouth, but he tries very hard:)
This week I have a few prayer requests:
*Pray for the EEG results we get back this week to show improvement. The insurance company has denied paying for the oxygen therapy because they say it is experimental. I am going to appeal it, but I think if we have results that show improvement, it will help us that much more.
*We are taking Luke to the eye doctor this Wednesday, pray for positive results here also.
*Pray for continued improvement in Luke. I really feel like one day everything we are doing with him is just all going to come together. The lady at the NACD told me what we are seeing is great, it shows his brain is starting to recognize where his body is...slow and steady wins the race right!!!
Thanks for your continued prayers...If you BELIEVE, you will receive whatever you ask for in prayer. Matt 21:22.

Tuesday, August 21, 2007

Quick Clarification

Just to clarify, Luke is not awake yet. I guess I confused some in my last post. He does have definite sleep and wake cycles, so when I wrote that, I just meant he was waking up for the morning. I think he would be considered mildy conscious now because he is definetly aware of everything that is going on around him. We just need to get those eyes open. We have another appointment next week with an eye doctor, and I have been talking with a neuro-opthamologist in LA that thinks he can help. We probably will not have EEG results until next week, the neurologist left on vacation this week. Also, the picture I posted makes Luke bigger than he is, not quite that big, just a little more than he was before the accident:) Thanks for the continued thoughts and support! Believe!

Sunday, August 19, 2007

A Haircut and Hugs from Sis!

I just had to post this picture here because it is so cute! Last night Mike gave Luke a hair cut. He has his EEG tomorrow, and they stick 30 wires to his head with gel, so he would have had one tangled mess. Since Luke's hair grows so fast, he decided to go with a buzz cut. We were worried his shunt tube would be very noticeable, but it is not too bad. He looks so much like the Lukey we have missed for so long, because his hair has been long since the accident and he always had it in a buzz cut. Then, last night Lynsey decided she was going to sleep in Luke's bed with him, so I took this cute picture. They are still in there peacefully asleep as I write this now. Many of you have asked me how she is doing. She is doing great! She truly does have the faith of a child, and tells Luke everyday, "Don't worry buddy, Jesus is going to make you all better." The other night Luke woke up crying at 4:00 in the morning. We don't know if he had a bad dream or what. I climbed in bed with him to try to calm him down, and about 10 minutes later here comes Lynsey to lay by him and talk to him too. She does not like to get woken up either! She is getting ready to start dance again this week, and was just voted the new Secretary at Desert Mountain Elementary so she is very excited.

We have also found Luke a new chiropractor to see. We met with him on Thursday, and he is great! Thanks to Sonja and Sonya for the referral. Thanks to all of you for telling Luke's story, because you never know when someone you might tell, will tell someone else, who might know someone that can help Luke. Anyway, Dr. Kan, at Hope Family Wellness Center, had some great suggestions for us for Luke's diet as well. We are now only putting him on the feeding pump at night to catch him up on calories. During the day, I am making him smoothies and vegetable purees in the blender and food processor. I think this extra nutrition is going to be key to him. Those of you that have seen him lately, have noticed he has put on a few pounds (for a kid that was always in size slims.) Dr. Kan also did some tests on Luke and his body is pretty out of whack. He is going to work with him three times a week for four weeks, then check for results. He is an awesome chiropractor and very close to us so that is great! I will drop Lynsey off at school then take Luke to see him for his adjustment which only takes about 5-10 minutes.

That's it for now...Luke is awake. Please pray for postitive EEG results this week and more progress from the gladiator. The prayers are working...Believe!

Tuesday, August 14, 2007

Finally...some new pics!

We continue to see little improvements. On Luke's left hand, his pointer and thumb finger are no longer tight...I think it is just a matter of time until his entire hand loosens up. He is responding good to the therapy program. One part of the program is to have him move his arms like he is swimming. He will move his arm back up on the mat about 70% of the time which is great! As for the speech part (swallowing,) he has completely mastered that. He is eating so good now! I was able to cut up cantaloupe into small pieces and also give him some macaroni and cheese the other day (Kraft, not the baby food kind.) He is moving his body a lot. On Monday we have an EEG scheduled at PCH. We are hoping for no seizure activity so we can get him off of the anti-seizure medicine. The folks that designed the new program really do not like him being on that. They will wean him off as long as he is still showing no seizure activity. We also start another round of oxygen therapy again on Monday. Then on Tuesday we have a phone conference with the NACD to see what they say about how Luke is responding to the program. Please pray for positive results with the EEG on Monday!

Also many of you have requested more pictures. One is Luke with his cousin Tyler, and the other...Well on Friday we had a special surprise. Kelly from our church brought us dinner. She called before to tell us her husband was one of the fire fighters that responded the night Luke got hurt. She asked if he could come by also. So, we got to meet two of the GREAT men that played such a HUGE part in helping Luke out that night. I think it is so cool that someone from our church responded and was able to pray for Luke right away (although he did not know at the time we went to Rockpoint.) Anyway, we are so incredibly thankful for all of the firefighters from Rural Metro as well as the crews from the MCSO, Southwest Ambulance, and Air-e-vac that helped Luke that night.

Thanks so much for continuing to check on Luke and keeping him in your means more to us than you could ever know! Baby steps...but the gladiator is getting day at a time. Believe!

Wednesday, August 8, 2007

Update on the Gladiator

I just returned home from attending the Creative Memories convention in Minnesota. Thanks to Mike and also my mom for persuading me that I needed to go. I had a great time, and Luke did fine while I was gone. Thanks to everyone that helped out with him.

Here are a few updates of things that have happened since the last post. On Saturday we had two wonderful women come over and do some energy work on Luke. They were here for about two hours and really felt that Luke had a pinched nerve in his back. They referred us to a chiropractor. Mike took Luke in on Tuesday to see him. Luke did indeed have two vertebrae out of place, so he fixed that. His left side seems a little looser now. These women were amazing! Thank you so much Sonya and Sonja! Thanks also to Dawnie and Justin for telling Sonja about Luke. She really felt she could help Luke, and she already has.

Sometimes I think Mike and I miss the little improvements in Luke because we see him all the time. I know I think has he done that before? Today when I got back his body is moving a lot. I even thought he was going to fall off the couch at one time he was moving around so much. He is also making louder sounds.

Thank you so much for continuing to check on the gladiator...we appreciate it so much...the prayers are surely working...believe!

Thursday, August 2, 2007

New Program

Well we started Luke on his new program on Monday. I must say...this is exactly what he needs. It is very intense, and the first day he did not like it at all, crying very loud. Yesterday my aunt Kelli came over to help me, and he did so good! I think Kelli missed her calling as a therapist...she was really good with him. We got Luke to respond when we put a Baby Bottle Pop (sucker) in his hand, he will bring it up to his mouth. He will also respond about 80% of the time when we ask him where his nose is. You can tell he is using every ounce of strength and energy he has to do anything we ask him to do, but he is trying so that is very encouraging. He is also responding by making more and more sounds. I really think this program is the answer to our prayers. I know I have said it before that I believe Luke is going to recover from this. I know there are people that think I am nuts for having so much hope. I found a saying the other day that says, "Sometimes God calms the storm, sometimes God calms His child." I really believe that is what is happening here, the storm is still raging, yet I am calm because I really feel God telling me it is all going to be okay. Besides, I look at how far he has come in just the last month alone. My next goal is to get his feeding tube taken out! Last night he ate an entire jar of chicken noodle soup baby food which is chunkier, and this morning I gave him homeade oatmeal for breakfast. He ate both without a problem.

I have had a few people email and call me about the news yesterday with the electrodes to stimulate the brain in people with brain injuries. It is very ironic because the last visit we had with the neurologist, I asked him, why can't they just jump start his brain to wake him up. If only it were that easy...but maybe it is. From what I have read on the study and procedure, I think Luke is the perfect candidate for it. I emailed the doctor overseeing the research this morning about Luke, so pray he will answer. I know a lot of times they aren't so willing to try these things on children. If there is one thing I have learned from all of this...never say never. Luke has beat the odds every single time so far...I believe the best is YET to come!