Friday, November 14, 2008

Better News

We just got home and wanted to thank everyone for your prayers and encouragement. The Neurologist doesn't think that COMA fits as a diagnosis. She is able to move her eyes with out moving her head. He also doesn't think that it is a "brain" issue either. When Masie closes her eyes the black spots go away - if it were a migraine for example the black images/sparkles would still be present (in her mind). He feels like the MRI is still necessary and wants us to be seen by a Pedi Neuro Opthalmologist as a "tie breaker" so to speak.

So we still do not have any cut and dry answers. I am confident the MRI will be clear. The Neurologist feels that it may be some sort of "tick" that may be exercised under stress or exhaustion. I do not feel AT ALL that there are any life altering issues we are dealing with. Last night however was a different story. Again, thank you for your prayers of peace because I have walked in them all day.

Masie really wanted to bring this Dr. a gift. So last night we created a "Joy" Jar to give to him. I shared with her that he sometimes sees really sick children and may need to find something to have joy about. She collected all her marbles (the toy kind not the head kind:) and put them in a bag to give to him (even though it was tied with a pink ribbon). Each time he felt happy about something he could add a marble to his jar. You should have seen his face when she gave him this gift. I know I was blessed by it and it was obvious he was too.

God will not waste a single prayer that was prayed on Masie's behalf. He has a reason for all of this though we may never know. If I had a Joy jar I would fill it up because we are not facing a life threatening issue - just life changing:) When faced with scary possibilities it has a way of making you embrace more fully what you already have. We are giving out hugs and kisses by the dozen, reading longer and laughing more...counting our blessings for sure.

More on this as I get info but until then there are 6 yr old Birthday Party inviations to make, a baby room to complete and lots in between:)

Thursday, November 13, 2008

Please Pray

Hey friends, family and passers by! My family is in need of prayer. In April/May we began to notice Masie Kate (5) doing some really weird things with her eyes. It's hard to describe in words - it's something you have to see for yourself. During the summer, other family members began to notice the funny "head jerk" and eye movement also. We thought it may have been from all the diving and swimming but decided to take her to a well known Ped. Ophthalmologist in August. After a 3 hour eye exam, she has 20/20 vision and no real explanation of the funny eye movement. We decided to drop all conversations of it and just observe her for a while - maybe it was just a weird habit.

In the last 4 weeks, it has gotten much worse. Sometimes it happens multiple times in a row where I have trouble getting her attention. Ryan and I decided it was time to talk with her about it. Her description has opened many doors of possible explanations. She said she is seeing "black bubbles" and when she jerks her head and moves her eyes she is trying to clear them. She says that if she tilts her head back she sees "sparkles" and has to bend her chin down to get clear vision again. I asked if she was having head aches and she said yes. I asked her why she hasn't told me and she replied, "I don't want to take yucky medicine".

Early Monday morning, I had a "come to Jesus" so to speak. I told God that I was going to CHOOSE to walk in peace and fight off fear but I had one explanation. At 8:00 I called the Opth. and asked for an appointment (which I knew I would have to wait for - he's the busiest in SA). After describing what was going on with our girl, they got me in at 1:45 that day. The DR. gave us his diagnosis (what he thinks is the problem). Its called Congenital Oculomoter Apraxia (COMA). However, he wanted us to see a Ped. Neurologist and have an MRI just to rule out anything else. The only problem with his diagnosis is it doesn't address AT ALL the bubbles and sparkles MK is experiencing. Also, the "head jerking" isn't because she can't move her eyes its because she's trying to clear her vision.

We have an appointment with the Ped. Neurologist tomorrow at 9:15 and a MRI Monday at 9:45. At first we weren't going to be seen until mid December but after an explanation we got our slot in just two days (God is good). Here is where you come in...

Please pray for the following:

1. For Masie to be completely honest in her responses. That she would not feel ANY pressure to say what she thinks we want to hear. This is so important for an authentic evaluation.

2. That I would recall ANY detail in the last few months that is out of character for her and not feel silly about documenting it. In the last two weeks she has complained of her legs aching, her back hurting and has asked to take a nap a few times...yet has continued to play her guts out!

3. That Dr. Gay would be able to determine what is going on. That he would be full of understanding towards me and Masie, would speak in such a way that I could understand and most importantly that he would go with his gut. Two Drs. have told me that they feel certain that the MRI will be clear and that the Neuro report would be negative for anything out of the ordinary. That would be great however, I want to be certain and I am asking for God to pour out discernment and wisdom on Dr. Gay.

4. Finally, please pray that all of this would be resolved quickly. I know God is capable of healing with no further explanation. However, if He chooses not to, I am trusting Him for an explanation so I can have a "sound mind" and not live in the "what ifs" and speculation.
When we get through at the Neurologist I will send out an update - even if things are still up in the air.

With much hope-