Thursday, September 27, 2007

Long wait and no clear answers

We had our appointment with the neuro-opthamologist this morning. Here is how it went. I arrived for his appointment at 11:30. The lady called me back and said, "Oh, is he sleeping. We need to do a vision field test on him." I said, "No, his eyes have not opened since his accident, that is why we are here." She proceeds to tell me they have us scheduled for a two hour vision field test, and the appointment with the doctor is at 1:45. Now, I told them very clearly when I made the appointment that his eyes were not open so he would not be able to do the vision test. I had to wait around around downtown Phoenix for 2 hours! Not the way I planned the morning! So, we got into to see the doctor. Basically, we have no new information to report. He wants us to wait another 2 months before deciding to do surgery. He says kids are amazingly resilient (we've already seen that:) I really like the first doctor we saw a lot better. He had much better bedside manner, and is also a pediatric specialist. So, we will see him again in a few weeks, and I guess decide what to do after that. I was a little upset after the appointment, mainly because of the wasted time. So, I get into the car and hear, "Tunnel," right away. Just a reminder to me that I am not in control, He is, I just need to be patient. I really feel in my heart that his eyes will open without surgery. So please continue to pray for his eyes to open and for his left side to come around more.

On a more positive note, he starts Physical and Occupation therapy tomorrow (an hour of each.) Please pray that he will respond well to this. I am still filing appeals with the insurance company to pay for it, at the place we are going....hopefully they will say yes. Thanks so much for your continued Luke's song says...there is a light at the end of this tunnel....sometimes I just wish the road to that tunnel wasn't so long and bumpy!

Sunday, September 23, 2007

Sweet Soul

Luke continues to respond to basic commands. Our favorite new one is he will pull a trigger on a toy gun. For those of you that don't know, Luke loves to go hunting with Mike so he gets a big smile every time he does it. He will also move his leg and arm when asked (still praying for that left side to come around...and it is very slowly.) This morning I told him if he wanted to be a Power Ranger for Halloween to touch his nose or if he wanted to be Jack Sparrow to touch his knee. He touched his knee so I said, Mommy is going to get Jack Sparrow then, and he got a big smile on his face. I have noticed he seems to respond better to other people besides Mike or I...guess that is typical for most kids though. I am praying we can start physical and occupational therapy this week. I think this is really going to jump start him. I have been writing letters to insurance companies requesting exceptions for benefit payment, so hopefully I will hear back Monday. We did start speech therapy last week. Thank you so much Cheryl for picking up Luke and for making the drive to our house!

Just a little story to share. One of the Sonjas ( the great duo that comes to see Luke occasionally) told me that her chiropractor, who saw Luke for his first chiropractor visit, told her what a sweet soul Luke has. I have to tell you, he really is blessed with such a sweet soul. I can not even begin to imagine how frustrating it has got to be to him to be where he is now, when inside he knows everything he used to be able to do. His crying spells have gone down so much. Although Mike had been gone hunting for a few days, and every time he heard dad or Mike he would cry. He is doing so good, being such a trooper, fighting so hard, and I am so very thankful for the patience and endurance he has been blessed with to fight. I think the name Gladiator fits now more than ever!

This week a big prayer request is that our visit with the Neuro-Opthamologist goes well. It is so hard when you have one doctor telling you to do surgery (to get his eyes to open) and one telling you not to. Please pray he will have the answer to our prayers on Luke's eyes, and please pray it will be positive! He also goes for his periodic pediatric check up on Friday. So hopefully, the next update will have positive news on the eyes and news that he has started all therapies (and the insurance will pay for them.) Thanks so much for checking, God has been so good is answering our prayers....Believe!

Saturday, September 15, 2007

It's the Start of Something New...

You know I have watched "High School Musical" way too many times when I am using a song from it for a title, but I really do think it is the start of something new for Luke! I think everything we have been doing is now starting to come together. When we met with the neurologist last week, she said an important thing that needs to happen is for Luke to start following commands. Basically, the brain stem (where the bulk of injury to Luke's brain was) is the pathway through which all signals from the upper brain go out to different body parts causing the action. So, we really need to see that these signals are able to get out to the body and cause the action. Now, he had been following just a few commands such as finding his nose. This week I have really been working with him a lot. He will now stick out his tongue (although it doesn't come out too far,) wiggle his toes, press the buttons on a play piano, and bring an object up and down. The cutest thing about it is he gets his cute smile on his face each time he does something we ask. Sometimes he will cry too because I get a little overly excited and probably scare him. I am sure there are many other commands he would follow, we just haven't asked him the right ones yet. I thought of the toes and tongue this afternoon, and sure enough when I asked he did it. I really think we are on the brink of something big happening soon. There's a light at the end of this tunnel I know....Believe!!!

Tuesday, September 11, 2007

New Neurologist

Yesterday we had our appointment with the new neurologist. Mike and I both really liked her. She suggested a neuro-ophthalmologist we can take Luke to in Phx. She said she would not recommend surgery just yet, as there is still time for that nerve to come around. She also suggested we get him in some other therapies soon, so we are hoping to start that next week. She is going to do another MRI and follow-up with us the end of October. She seemed surprised that they had not done another one on Luke since April, and more surprised that no one has ever sat us down to over one of Luke's MRI's with us. She wants us to have all of the MRI's they have done at the next visit so she can sit down with us and compare them all and see what is happening with his brain. She was very nice. She asked us when Luke woke up, and we told her we weren't really sure what was considered waking up since we have been waiting for his eyes to open. She said if he is responding emotionally then he is awake. So, I am going with his waking up date of June 25th...that was the time he cried for the first time, and I know it was an emotional response to the stories I was reading him. I think we are definitely on the right track now that we have a neurologist that cares on our side.

Friday, September 7, 2007

Gladiator Update

Here are some updates on Luke: We are able to wean him off of the anti seizure medicine. He will officially be done on the 14th:) He has an appointment with the new neurologist on Monday...please pray she is not a Dr. Doom. I have heard good things about her from a few different people, so I am excited. For Speech we are working with Luke on drinking from a cup, sucking , drinking with a straw, and blowing. He is doing good so far with the cup. I tried getting him to suck last night with some fun dips candy, but the little stinker bit off a piece of the hard candy instead. I let him chew it while watching him carefully, just to see what he would do, and he chewed it very quickly and swallowed with no problems. When I think that he is doing all of this with his eyes closed, it makes me that much prouder. When someone is standing next to him and he knows they are there, he will reach his arm up and try to find them. His sounds are getting louder, and he is responding more with is a super cute half smile (since his left side nerves are still paralyzed.) He also has a lot better control of his head. I was driving the other day, and his head was starting to lean. I said, "Luke, move your head back to your spiderman pillow." He did it...three different times!!! We took him back to neuro link after a 5 week break, and he was very impressed with where Luke was at since the last time he had seen him. That was very encouraging, and he really thinks the left side is coming around. Just a side story...I have only taken Luke into a store 3 times now, because usually I just run errands when someone has him. Anyway, yesterday on the way to oxygen therapy I realized I had left my book at home. I stopped at Walgreens to get some magazines to read, otherwise it is very boring. Anyway, this lady comes up to me (out of no where) and the only thing she says is, "Your son will be healed." It kind of caught me off guard so I just kind of looked at her, so she said, "No really, your son is going to be healed." I said, "Thank you, I believe that too." And she smiled and walked away. She never even asked me what was wrong with him or anything or if he was my son for that matter. The ironic thing is when most people look at him when he is in the jogging stroller, they just think he is sleeping, not that something is wrong with him. Anyway...I have said it before I will say it lots more times I am sure...but this lady reminded me....Believe...thanks so much for the prayers!!!

Wednesday, September 5, 2007

Six Months...Journey to a Miracle!!

Six months ago tonight our journey to a miracle started. Along the road we have seen so many miracles so far. From Luke surviving those first 3-4 days when all of the odds were against him, to where he is today. God is great!!! Never doubt the power of prayer...Luke is here today, 6 months later because of you all...the best part is...he is improving. We are truly humbled by everyone that has been touched by our gladiator. I was going to put my thanks here to everyone today, but I know I will leave someone out. So, THANK YOU ALL so very, very much for the prayers, meals, cards, referrals, babysitting, carpooling for Lynsey, words of wisdom, house calls, EVERYTHING you have done...we appreciate it SO, SO very much! Know that you are all part of this miracle we are seeing unfold before our eyes. Thank you so much for the extra prayers going up for Luke today. I have gotten emails from people I do not even know that are praying...thank you also for spreading the word because, "If you believe, you will receive whatever you ask for in prayer." Matthew 21:22 God Bless you all...I have included some of my favorite pictures of Lukey. Believe:)

Monday, September 3, 2007

Almost 6 Months...

This weekend Luke was able to go on his first overnight trip. Mike went hunting on Saturday, so I took Luke and Lynsey up to my parent's house in Payson. You could tell he knew we were there and it was nice to be able to take him away and see him do fine.
I have been in contact with a neuro-opthamologist in California. I emailed him what the Opthamologist here told us about Luke's eyes. This guy really feels we should use surgery as a last resort for Luke. He thinks therapy would be a lot better option. I will be faxing Luke's records this week for him to look over. I have also made an appt. with the other neurologist that someone posted here (thank you whoever you are:) That appt is Sept 10th.
This Thursday, September 6th, will be six months since Luke got hurt. I know everyone has been praying for Luke since then, but I am going to ask if you can please say a special prayer for Luke this Thursday. First and foremost, please pray that he will be healed, that he will open his eyes soon, that he will continue making progress, and that the doctors treating him will be positive. It really is hard to believe it has been six months since that horrible day. The time has gone by so very quickly, but more than anything in this world I want my little boy back. I want him to be able to ride his bike, dig in the dirt, go hunting with Mike, chase Lynsey throughout the house, lay on the couch in the morning with his blankie watching Sponge Bob, and I could go on and on about everything I miss Luke doing. Yes, I am VERY thankful that God has gotten us this far with Luke, and sometimes I don't feel right asking for more, but the thing is, I KNOW that God is the only one that can heal Luke and make him whole again. I believe in my heart of hearts that this will happen or should I say IS happening...the small steps we see Luke make everyday are just more proof to me that God is answering our prayers, in His time, I will get my Lukey back. Thanks so much for your prayers and continued support..remember this Thursday, let's flood the pearly gates for Luke, please spread the word for prayers to anyone you know. Believe!! What is impossible for people is possible with God. Luke 18:27