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 prayers....Believe...as 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!

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!

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!!!

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.