Update on Alli

Sorry we haven't updated in a few days, but no news has been good news. Alli made it almost one full week without a seizure, but yesterday afternoon had another episode after a very busy day at school. I was fortunate to get to converse directly with the pediatric neurologist today about Alli and her testing. No "classic" seizures were picked up, but an interesting episode of pain that turned violent followed by the classic seizure stares and sleep. At this point they're thinking that Alli's episodes may be induced by a sudden onset of pain from her head injury. The good news is, no seizure meds nor expected long term condition. The bad news is, the only treatment really is pain meds but you don't know to give until the episode starts, and by the time the meds hit her system good, the episode is over. So basically, she'll just have to suffer with them until her head heals at which point we pray they will have stopped. Because her skull fractures have shown no signs of healing yet, another CT scan will be done in Dec. There's still a chance that if they don't heal towards each other, some intervention could be required. They say she's on a "see-saw" age of wanting to do surgery or it being able to heal on it's own. The big factor is whether the fractures will heal towards each other or continue to separate.
To encourage us all though, most of the time, you see the same ole sweet Alli. Unfortunately for us though, there have been times of hitting, biting, screaming, downright defiance, and of course the episodes we've been talking about. None of this was normal behavior of Alli before and is assumed to all be stemming from head pain and "not normal" feelings and signals her body is currently giving her.
Well Happy Thanksgiving to all you, especially my Nashville'd nephew!
My daughter #2 was instrumental in starting a family tradition where we pass around the fall-adorned Thanksgiving spoon just before meal prayer and each vocalize what we're thankful for this year. Mine may be a little long this year...
I could not be more thankful than I am this particular Thanksgiving. God has been so gracious to us through this new path for us. Thank you Lord for seeing fit to spare my little one's life.
I'm especially thankful to my LE folks who have loved on me constantly. You guys are so precious and dear to us and I can't begin to express my gratitude for what you did this past weekend. You guys are awesome. I love you, and really do consider you part of my family.
To my J in Fl, we still love you, still miss you, and still pray for you often (Bug wouldn't dare let us forget!) I am so thankful for your friendship!
To my sweet friend E, you and your family are an answer to many prayers for our family. Our friendship bloomed in a time where I really needed a friend, and it was just perks that you had girls and a ministry minded husband to compliment my own herd. We are so blessed by your friendship and hope to be old folks sitting around the card table with you one day!
To my family, friends, & people who just tolerate me...I can't say thank you to God enough for the honor to be in your lives. You each have touched my heart in countless ways, many I have named here over the past month. I have prayer warriors, crying partners, laughing buddies, old faithfuls, new made friends for life and encouraging words all around me. You guys are all such a blessing to me, really.
So truly, a Blessed Thanksgiving to you all, and I pray that one day I'll be able to be a part of heaping Blessings upon you for all you have done for us during this time. God Bless, Jesus lead, and Holy Spirit whisper. I'll talk with you all again after I've reached my limit on mom's dressing and gravy!

Home again (Alli update Tue)

This round of testing is complete, so we've returned home. Alli's blood work showed her CRP level has dropped to 9, so give God Glory. Her hematocrit level is also coming back up, another praise. We've settled in back home, best we could, and so far so good for Alli.
As before, God has been good to us. The EEG tech was awesome with Alli, and so caring. These 24 hr. EEGs usually take upwards of 2 wks to get back results, but he said he'd go ahead and read it today. I couldn't believe he was taking time out of his schedule like that for us. He seemed to really take a liking to Alli. He also has 4 children, so maybe it was just mercy as a fellow parent! Lord thank You for M.J.E. and the role you use him in to reach families for You.
Sadly, we did return home to find our oldest has been running fever. She's in one of "mom's homemade sick beds" on our couch feeling puney. Please pray this would not float throughout our family, kicking us while we're down.
I know I've said it before, but we so very much have appreciated each prayer and concern lifted up on our behalf. I know God hears. I see it in action each day. As much of a uncertain and sometimes frightening time as this has been, God has remained constant and has shown Himself to us each day of this asperity. As I've said before, I've seen "God things" from the very moment she fell. And they've continued each day since, sometimes in ways that only I would know it was a love note from God. The ones most recent? Something as simple as meatloaf and mashed potatoes I had planned to make shortly after the accident, but have not had time to. What did the hospital volunteer drop by my room yesterday? A plate of meatloaf and mashed potatoes! From who? You know my answer. And I could sit here endlessly naming ways God has shown up or slipped love notes to us while on this darkened journey. Many times a little love note just to say, yep, I'm still here, and yep, I'm paying attention. Like my hubby's associate newsletter that simply said, "Emmanuel, God with us. That is the message that we must keep alive during these difficult times." Wow. Or a very special blessing from my dear friends the T's, that just might obliviate a recent prayer request I had not even been able to find the words for.
God hears our prayers. And He truly hears the grownings of our hearts when we are without words. I must say I feel so incredibly unworthy of the Love pouring over me during this time. And I am forever humbled by this touch from the Master's Hand. And you all have been such a big part of this miracle in our lives through your prayers and support. God Bless you, and God return to you, in a mighty way, the love you have shown to us during this time.

Testing, testing, testing...(Alli update)

They're repeating CPC and CRP blood tests later today. Alli is resting right now. She had an episode after lunch today where she became violent. I've never seen that before. Afterward she went into the blank stare, then climbed into my lap and went to sleep and has been sleeping for hours now. So I wonder if she may have had a seizure. Whatever it was, I didn't like it!
As usual, the staff here is wonderful. Hubby had to return to work, so mom is here with me. She's fairing well! Crocheting of course.
The EEG tech told us we'd be here overnight and based on what the readouts look like in the morning, he may decide to leave it hooked up another 24. But we won't know that until probably lunch time tomorrow.
As always, thanks for your prayers and support. The sleep deprivation was tough, but God has been gracious. My blessed aunt who lives in the area brought us lunch today (love you dear!) and then I took a nap while mom hovered over Alli for me.
I wonder if they'll let me have a copy of the tape for memorabilia? No scrap booking that one J!
Plug to E, thanks for caring for my girls! Kiss them or spank them, or whatever it is they need for me and tell them I love them and miss them.
Love to everyone! Continue to pray. With her sleeping so hard now, this may turn into an UP night.

We interrupt this hospitalization...

for a golf game? Bridge anyone?
They've decided to send us home for the weekend and report back on Monday morning for the 24 hr. EEG. Some of the staff needed for testing won't be here over the weekend, so they have decided to let us go home for a "breather" and come back bright and early Monday morning to resume testing. We'll be sleep depriving on Sun. in preparation for the tests, so keep us in your prayers. Although this will be a lot of travel for us going home and then back here Monday, we are excited about going home to see our girls for a few days.

More testing (Alli Friday AM update)

Testing today may keep us from using our cell phones. The last EEG, we had to power off our phones, so that may be the case today as well. Not sure though.
On another note, her bloodwork from yesterday is back. Her CRP level is 126, and it's supposed to be less than 4. So there's definitely something hiding out in her body. Infectious disease should be coming around to decide how to find what's hiding out in there that initial blood work, urinalysis, Xray, MRI, and spinal tap have not seen.
Keep praying as this should be a long day. We'll update as soon as we're allowed to use our devices again.

Alli update Thur night

More blood work was done today. No fever since lunch time so that's a great improvement. Alli had a real "touch me not" episode around supper time which was hard for the hubby and I.
Tomorrow morning she'll be rewired (like the last picture post) for a 24 hr. EEG to run in hopes of catching one of her episodes. It will run all tomorrow and then through the night with some sleep depriving again. There are a few variables that are a down side with this test. One is that we can't leave the room for 24 hrs. because of the video system that will be in place to record her behavior along with the EEG graphing. Another con is that by being in the room all that time, her activity level will be limited, and all of her episodes have followed a period of physical activity. Because of this, we still may not catch one of them and go home on assumptions. If that's the case, then we're supposed to carry around a video camera, recording her, trying to catch the next one so the neurologist can see one for himself. This really makes us hope the 24 hr EEG will catch one so we can have their data to confirm what we've been experiencing. We had some medical personnel witness last night's episode, but not the neurologist. He says there is a chance that this isn't seizures, but an onset of pain from the injury that she can't handle and then goes into a temp. shutdown, looking like a seizure. It was called a vega response, I think (I may not be remembering that term correctly). Anyway, that's why he really wants to catch her on video and EEG together to try to prove which is causing the seizure behavior, whether it be actual seizure or intense pain that her brain can't handle. Quite honestly, they don't sound much different to me.
Anyway, I was reminded tonight by the neurosurgeon (notice we have a neurologist and a neurosurgeon, and they are quite different) that if the EEG doesn't show a seizure, that only means that she's not having a seizure during the test. Proving it isn't necessarily our purpose here. That would just present proof of what we already knew, but what we as Christians have to remember that our answers come from God. All this testing may not give us any concrete evidence to go on because of all the variables. But God will give us answers, in His timing, and the only variable is our faith-our hope and trust in Him.
Good night and God Bless. Pray that we all handle being confined to this room all day okay, especially Alli who's gotten used to going to see the fishies each day since we've been here. Also, her sleep tonight has been quite restless. Hubby on the other hand is snoozing just like at home- in the chair, feet propped up, computer in lap, head back, mouth open. I'll probably receive some kind of punking for saying that later! Too bad I didn't have a picture...

Alli update Thurs noon

Alli's EEG did not show any immediate malfunctioning in the brain. However, Alli did not fall into a deep sleep as they anticipated so results were from awake and dosing screenings. Last night she had another seizure while the nurse was in the room. Today the doctor said they may order a video EEG which would have her hooked to a monitor for 24 hrs and a video on her to compare her behavior to the readouts. Her episodes are always late afternoon/early evening after activity, so this is another reason to want to do a 24 hr monitor. Her fever broke around 4 this morning, but she is starting to show signs of creeping back up. They want her fever free for 24 hrs. before discharging and are concerned at how it spikes, goes away, spikes, goes away. They are considering calling in the infectious disease group because initial testings aren't picking up anything and they think there's a possibility that a bacteria could be hiding out somewhere in the body.
Alli is well occupied with fun by the child life program here and their playroom. She does not have a good appetite right now though, and we're having to pretty much make her eat what she does take in. The hubby and I are entertained by their pool table (and our lack of skill!) but now have to go out for food because their food voucher program has stopped and they don't do courtesy trays like back home. Usually the hubby goes out & grabs something for us while I hang out with Alli. The staff here is wonderful and has offered many times to sit with Alli while we "take a break", but you know me, I can't make myself leave her. I know some of you are wanting to visit, but it is advised against until this fever source is tracked down.
Thank you again for your continued prayers and support. God is still good and carries as during this time. I must admit, just being away and getting to sit down and watch tv or play a game with my hubby has been a very welcomed return. Most of you know that kind of time has been very little since the start of ginhouse. So see, God sends little treats amongst our trials, and He knows our hearts desires and sends us little love notes amidst our tribulations to lift our spirits and show us that He is near. I love God's tact!