Friday, January 6, 2012

Update Friday evening 1/6

Happy Birthday to Dale!  Thanks be to God---Dale is turning 13 today!  We are so blessed to have our son here, alive and doing great, to celebrate his birthday.  Imagine, if God had chosen to take Dale home to Heaven back in August, what a different set of emotions would cloud this day.  All of you wonderful folks who have prayed, cried, agonized, and laughed right along with us, you are a part of this birthday celebration; you have reason to rejoice!  Dale is not just 13 today---he is a joke-cracking, fun-loving, sister-teasing, almost-back-to-normal-but-still-healing 13-year-old.  What a flood of thankfulness fills my soul!  I wish I knew more than one language so that I might praise God in more than just simple English.  I need a thesaurus to find more words to express my joy and love to our Father.  He truly "doeth all things well."

Yesterday, Dale and I went to PT again.  Dale continues to work hard each time, whether he feels steady or shaky, tired or rested.  He walked on the treadmill (turning the machine on and off himself, pushing the speed up to 3.2, walking for four minutes), rode the stationary bike (fitting his feet in the pedal straps with minimal assistance, thinking and planning how to get on and off before attempting to do so, even letting go of the handlebars for a few seconds), walked up and down the stairs (not his favorite activity, supported himself with the handrails only, was willing to try moving each leg up to the next step like normal as opposed to stopping fully on each step, practiced these moves two or three times), worked out on the Total Gym (strengthening his legs, balancing himself as he stood up and sat down on it), used the rebounder (played catch with himself, used one hand at a time to throw the ball and both hands to catch, stood sideways so that he had to turn his trunk to throw and catch the ball---very good for him, raised both hands above his head to throw), walked on the balance beam (had two-hands assistance for this, tried to put one foot in front of the other---heel/toe, boasted that he could walk backwards too but couldn't :-{, kept going even though it was tough), and finished up with a game of Cootie (you know.....you build the cootie bugs by choosing a head, body, six legs, antennae, eyes, and mouth---great OT for Dale).  Dale was rather tuckered out by the time he was done, but it was a good tired feeling.

Dale also had a neurology appointment yesterday.  I was excited and concerned together about this appointment.  As it turns out, I was in for a lesson (once again) in trusting God with Dale's health and future and not worrying about things over which I have no control.  The neurologist is the same doctor who saw Dale in Good Sam when he had a seizure there.  The smile on his face when he saw how well Dale is doing was wonderful to see.  He did almost a double-take, then looked at me and said, "He's really doing well, isn't he?"  I was happy to answer affirmatively.  The neuro doctor had Dale perform various tasks like standing on one leg, rocking back and forth from heel to toe, tapping out a rhythm with his hands on his knees, closing his eyes and touching his nose, etc.  Each task Dale performed either well or good enough; the doctor realized, I'm sure, that Dale is still in the healing/recovery phase.  Then the neurologist shared with us the results of Dale's EEG from last week.  He said the background, which before had shown obvious signs of damage, was looking very good, in his words, "almost normal."  That was GREAT news!  He further stated that the clusters (I think) of extreme brain activity---seizures---has decreased but that Dale's brain is now showing definite spikes of seizure activity......too many for the neurologist to be comfortable with.  If Dale had been having spells every once in a blue moon, we would not need to be concerned.  However, Dale is experiencing these episodes quite frequently......every one-and-a-half to two weeks.  The neurologist used the comparison of the glass half-empty/half-full.  He was pleased to see parts of Dale's brain showing definite signs of improvement, but he was concerned to see those seizure spikes.  He said it is possible that "seizures beget seizures"---that, having responded to stressful situations (a.k.a. falling, shakiness, etc.) by going into a seizure, Dale's brain might be thinking that having a seizure is the thing to do.  And he warned us that, even though Dale's spells have lasted a minute or less, there is no guarantee that a big seizure won't come and catch us unawares.  In his words, being a neurologist, he recommends treatment:  anti-seizure medications.  I questioned him on this, having been told in the hospital that anti-seizure meds tend to put a damper on brain activity.....and we want Dale's brain to be able to be active!  He agreed, even stating that he realizes that we have to make a choice here.  In his mind, the choice to be made was between treating Dale with anti-seizure meds and take the side effects of drowsiness, possible lesser brain activity, and such or letting him continue to heal, stabilize, strengthen, and possibly outgrow these episodes.  This is the medical viewpoint and a very real decision.  However, the choice in my mind was even harder:  trust God or don't trust Him?  I realized I had to again give my son to God to do with as He sees best.  I don't want Dale to have medication or seizures.  I want Dale to be fully healed.  I want everything to return to normal once and for all.  But that might not be what God sees as the best overall outcome for our family and for Dale.  I want God to heal Dale and remove the seizures......but maybe God can use Dale best by allowing him to have seizures.  I want Dale to be completely healed from all of his injuries......but perhaps he will only be fully submitted to God's will for his life if he has to trust God daily for his health.  I am still afraid that Dale will not recover fully, that he will only be healed to a certain point, that we will be saying years down the road what a miracle he is and isn't he doing well for having such a traumatic brain injury---you know, in a kind of "we have to be thankful for this because God says so in the Bible but I wish I didn't have to deal with this" kind of way.  Do you see?  I wasn't trusting our Lord with everything; I was still holding on to my fear and worry.  I had to have a serious, heart-felt, tears-streaming-down-my-face-as-I-drive-home talk with my Father to apologize for not fully giving my son to His care, for not fully giving our future to Him, for holding back some of my trust in case I judged Him unable to care for my family in the way I thought best.  Chad and I talked and decided again that we do not want Dale on any anti-seizure meds because of the possible side effect of slowing brain activity and impeding the healing process.  We are going to have a prescription filled that the neurologist wrote for a medication to be used in an emergency in case Dale has a seizure that lasts longer than three minutes.  Being prepared is not to be confused with not trusting our Heavenly Father.  But it's good to know that, at least for today, God and I are "on the same page."  Maybe that would be better put that I am on God's page!  I thank God (almost daily) for His long-suffering toward me and my weak human foibles.  The children's song "He's Still Working on Me" is very, very true about me!

I have much, much more to share, but I have to sign off for now.  Hopefully I will be able to post another update soon.  God bless you all!

Micah 6:8  "He hath shewed thee, O man, what is good; and what doth the LORD require of thee, but to do justly, and to love mercy, and to walk humbly with thy God?"

10 comments:

  1. Happy Birthday to Dale! I hope the seizures will go away on there own. Our daughter had to take the anti-seizure medicine Trileptal for about 3 years, after having 2 complex partial seizures when she was 3 years old. She didn't seem to have any side effects from it and had no seizures while she was taking it. She finally passed an EEG and got of the medicine about a year ago and has has no seizures. I hope things work out this well for Dale too.

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  2. HAPPY BIRTHDAY DALE!!!!!! FROM CANADA

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  3. OOPs...forgot the joke
    A local monastery was going bankrupt. The abbot didn't know what to do. The brothers had a meeting, and decided to open a great Olde English Fish-N'-Chips stand. One day, a man knocked on the door. After one of the brothers answered the door, the man asked, "May I have just an order of fries?"
    The brother said, "Hold on a moment. I'm the fish friar. You want the chip monk."

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  4. Happy Birthday to Dale! Thank you for giving us all the opportunity to pray for Dale and for all of you. I will continue to bring you before the throne of the Lord knowing that He has a perfect plan for all of you. As a mom of two boys I am so thankful for your example to me to continue to trust the Lord in ALL things.

    Blessings and prayers from Russia

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  5. Happy Birthday Dale! EEK your a teen! LOL
    Kirsten, I completely understand where you and your husband are at when it comes to the seizure meds. I will tell you though, that I take meds that are often prescibed for seizures for anxiety, and although they do make me more lethargic they actually help me to focus better because my brain isnt going a thousand different directions at once. I assume that the doctor prescribed Ativan that you mentioned emergencies (lorazepam). I have been on that and it does wipe you out fairly quickly, but doest stop a panic attack in its tracks too! I switched to Valium (diazepam, same family) which i take at night and because it stays in your system longer it helps me to sleep and continues throughout the day without the drowsy effects. I can also take it again in the morning but find I dont need to most days. I am not going to pressure you guys into using medication to control the seizures but i will say that had you said,when Dale had his accident, NO to medical intervention Dale wouldnt have survived, and if he had he wouldnt be coming along the way he has. Don't look at those pills as something that God wouldnt want. God created medicine to be used (responsibly) and He created doctors who would know when these things are going to be beneficial. If Dales seizures do continue at the same frequency i would strongly recommend talking to the dr about a longer lasting medication without the peaks and valleys of most meds, like Valium. You have to also take into account that Dale has always had his seizures in a safe place, this may not remain. He could easily have a seizure and bang his head on a corner or hard item and cause major set backs to. I pray that you guys make or have made the right decision for your family, but please please please dont even look at a medication and think that if you use it you are abandonning your faith in God! I pray that Dale doesnt have any more seizures and its not a problem. If you ever have the time to talk about the different medications and stuff I am open to talking to you about them. My dad calls me a walking pharmacy becuase i have been on so many different meds over the years. My email is meanddoxie@gmail.com I would be glad to talk to you about anything. As always you and the family are in my prayers! God bless and Happy Birthday Weekend Dale!

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  6. I am just going to say, Happy Birthday Dale. You are a teenager!!!

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  7. Happy Birthday Dale. Here is a joke for you.
    "The invisible couple had a kid. But he isn’t much to look at either!"

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  8. http://www.youtube.com/watch?v=o_rEjk1bcQw&feature=related


    9 parts...

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  9. HAPPY BIRTHDAY (a tad late) Dale. Our youngest son (out of four) celebrated his birthday on the 7th. He's a bit older than you, though. In fact, sixteen years older :-)

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  10. Once again thank you for sharing your heart with us all. As you pray for Dale and for leading from God he will let you know what you need to do and many times faith goes against the normally human spirited understanding. "Trust in the Lord with all you heart and lean not on your own understanding." Prov 3:5 As I continue to expect absolute healing for my 9 year old son I continue to grow in God's understanding for our situation. When you feel peace in your soul about something you have prayed about, you know you are in agreement with God's will. You then know when to move and when to stay still and wait. "May the Lord bless you and keep you;may the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.”’ Numbers 6:24-26

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