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!

Alli update 11-12-2008

Alli had her EEG this morning. Keeping her up during the night wasn't nearly as hard as you may think. And believe it our not, she has been so wired today. She just went to sleep for the first time at 6 pm. She's continued with fever and has had vomiting today. Before uploading this message, at 7 pm she had another seizure while the nurse was in the room. I was very glad that a medical personnel finally witnessed what we have seen.
We should have results from the EEG tomorrow and further testing as well as our tenure should be discussed then. Hopefully we can get some sleep tonight because we are exhausted. I'll be honest and say I haven't answered every phone call today, some we couldn't due to testing. But I assure you, we're reading every email, every blog posting, and listening to messages on my cell. Thank you so much for your prayers and continue to lift our family up before the Lord.

Well, I'm back again...(Alli update)

For anyone who doesn't already know, we're back in the Children's Hospital. Alli has been struggling with seizures, 4 in the last 2 weeks. She's to stay up all night tonight and have an EEG in the morning. Then the rest of our tenure will be determined based on the outcome of those tests. Alli is also running some fever that tests have not shown an answer for yet.
We have the laptop with us and welcome your comments, prayers, and emails. Please continue to pray for us that Alli's care and diagnosis would go in accordance with God's will and plan for our lives.

How yesterday unfolded (Alli update)

Continue to pray. You can probably guess how yesterday turned out. Yep, back to ER with a 105 temp. First they repeated all the tests from Thur., plus an xray, and all of those looked fine. So then it was on to something a bit more scary, a spinal tap. They started to use one med in sedation, then found out they couldn't use it with her head injury because that med raised the pressure in the head. So instead, they used one they were less fond of because there was a respiratory risk. So they hooked her up to all sorts of monitors and oxygen and proceeded. Then we had a scare. We were back out in the waiting room and the security guard called out her name. "They need you back in 6, just the parents." My heart sank, all of our crowd in the waiting room looked shaken and back we walked to her room. The worse was racing through our minds, but thankfully, it just turned out not to be the most personable security guy in the world. The doctor met us in the hallway and said it had been a perfect tap, not one problem in the procedure, and they were finished. Whew! So then we settled in the room after kissing and crying over her a minute, and waited for results. To God's Glory, everything came back fine. They couldn't find anything causing the fever, but had ruled out the alarming things, so they sent her home to rest. The fever had broken.
I'm feeling like, just keep her please, until every test is ran, and we know where we stand. But hospitals don't do that anymore. So I guess we'll continue with the back and forth.
The EEG is still scheduled for Thur. I'm home with her, hovering like a mother hen, wondering what will happen next. Just a reminder, my name is not Job. But you know, I might want to check the family tree...

Pray on this the Lord's day (Alli update)

NEEDING ADVICE!
Last night Alli started running fever. It was 103.2. She slept quite restlessly although the ibuprofen brought her temp down. Wondering what might be happening, I sat up until 5 am watching her sleep. We got back up to see she had 102.5 at 9:45am, more ibuprofen. She's acting fine, but in light of all that's going on right now, I'm considering if I should call the doctors. It's just before 1 pm now, and it's 102.8, just 3 hrs after Ibuprofen. Alright all my medical buds out there, I want your advice. I don't want to be the mom who worries the doctor to death, but I don't dare want to miss something important either. Should we call?

Attn Prayer Warriors (Alli update 11-07 Fri)

Calling all prayer warriors. Yesterday afternoon while grocery shopping, Alli had another episode, but this time it was much worse. It again started out with a little fussiness. Then set in the head grabbing and screaming "stop it, stop it". Then she began thrashing about and suddenly became very still. I started calling, "Alli, Alli, look at Mommy", and turned her face toward mine. She seemed to be looking through me. I waved my hands in front of her face, no response, not even a blink. I must confess I put my hand on her chest at that moment to be sure she was still with me. She was, so needless to say, we rushed out of the store, cell phone in ear trying to contact the doctors. They told me to take her straight to ER. After testing and lots of talking between ER and her out of town doctors, they told us her episodes were seizures. The MRI showed no hemorrhaging in the brain and blood tests did not indicate any internal bleeding. In a few days our doctors up state will be doing an EEG which is like an EKG of the heart, but instead it's of the brain. Hopefully this will tell them more about why she's having these and what we need to do in response to them. We would have had the testing today, but ER put her to sleep last night for their testing, and she must be sleep deprived for this upcoming test for the most accurate results. So now we're waiting on this med to work its way out of her system and in a few days will have the EEG testing unless she has another seizure before then, in which case we're to go ahead and travel up state to be admitted right away.
Each seizure has been more in severity, and yesterday, by far was the worst we had seen, really shaking me up for a bit. But now that we have a name for what's happening, I feel more at peace. We had a crash course in seizures last night that really opened my eyes to the different types and triggers of them. I had no idea there were such different levels of seizures, and such differing triggers for those who have them. I had always thought a seizure was a seizure and that was it. Now I feel better equipped with this new found knowledge and find peace in being educated on what to expect.
Depriving her of sleep the night before the test shouldn't be too difficult with her, but could prove interesting for us with such a long drive up the next morning. Pray for God's provision over us as we travel. Also, this means more time away from work for both of us. Please pray that both of our jobs will run smoothly while we have to be away, and especially for my hubby that there won't be a technology issues while he's out, plaguing him with calls and emails. He wants so badly to be there for Alli, but is pulled in so many directions between work and the ginhouse.
Amidst this difficult time, I was blessed to minister to another in need. I received an email asking me to pray for a man who fell about 20 ft. while building himself a "man cave". I must say I was so honored to pray over someone who is journeying on a path that I can pray for from the heart of one still in that valley. If for no other reason, I can say "thank you God" that I could pray with such an earnest heart for this family who is where I am, and that their tears could be my tears, that my prayers could be their prayers, knowing that God holds us in the shelter of His arms.
I can't tell you how many songs from days past have filled my heart over this past month. And how awesome to know that God knew way back when I heard them for the first time, that today I would draw strength and comfort from them. I cry at the drop of a hat these days, but not always of fear or sadness, but many times out of awe and wonder at how God could love us so much, and how we are precious in His sight. I have done nothing. Not one thing have I done that makes me worthy of what He's given us. My only worth, my amazing worth, is because the blood of Jesus, it cleanses me, it covers my wounds, and by His wounds, we are healed. And I can bow down before the Creator of all life and talk to Him, and Trust Him to hear from His Holy place, knowing that He's prepared the answer before I have even asked.
Yesterday before the seizure, we had went to look at handbags (this has a whole story of it's own where my bags are usually bigger than I am and I've made a commitment to my friend to consolidate the huge load I carry around). Anyway, I had in my mind I wanted to look for something with a Scripture on it so that I would not only carry my prized possessions on the inside, but also on the outside-His Holy Word. Of course, Satan's no fan of witnessing, and immediately plagued me with, "no that's not the Word I was thinking" or "wow, that's one loud bag". But as I searched thinking I was searching for Philippians 4:7, my all time favorite, another verse kept racing through my head so much to the point that I couldn't recall the words of the one I was searching for. But over and over, Proverbs 3:5 raced through my head..."Trust in the Lord with all thine heart and lean not unto thine own understanding." I couldn't find it, but over and over it raced through my head. Little did I know what would soon take place and that I would once again, be using His Words to carry me when I could not walk. So if anyone ever sees a handbag with that verse on it, I don't care how loud the colors, call me! I will be on it like cream on corn! I never want to forget how strongly I have felt the Lord's presence since Oct 9, and I pray that my life will be a living prayer. For it's in these times of trials, we can truly see how good God is, how mighty His hand, how merciful His love, how tender His touch. And though you may pass by me and think that just I have walked past, oh no, for there is One who walks every step with me, and carries me when I have not the strength to stand.
Through trials, troubles, and cares
I know that Jesus, my Savior is there
Giving me Faith in darkest days
Keeping me on the narrow way
Jesus, Savior, help me each day
Fill me with hope, fill me with Faith
And darkness retreats at the touch of Your Hand
Jesus, Savior, help me to stand
(Courtesy of another great Alison with just one L, whose voice for the Lord played a big part in choosing our Alli's name.)

Alli update for M, T, W

(FYI: this sight plays music. Have your speakers on!)
Boy, I'm slacking, aren't I! Well, this is one of those times, when no news is good news, I guess. Monday Alli became upset when it was time to leave a visit to her aunt's house. Unfortunately, her resistance led to head pain. So we medicated her, she began starring, and in about 15-20 min., she was out. That was about 5:30. She didn't wake up until 8 am the next morning! And sadly, sitting at breakfast, she began crying of her head hurting, so we medicated again. After that, her Tuesday went quite well. She proudly walked in to help mommy vote, got her "I voted" sticker and skittles (our precinct is so sweet) and then told everyone she saw after that how she voted the fire trucks. A little off, we voted at the fire station where there are trucks. Heh, heh, vote for fire trucks! Sure, why not.
Today was our first day at school without the helmet, and sure enough, someone's shoe made contact with her forehead. I'm seriously considering reinstituting the helmet. I know the dr. said she should be fine at school without it, but preschool can be a rough place! I'll have to think on this one, and just maybe pull mommy rank.
I won't drone on about my feelings on the outcome of the election, but I will say this. Regardless of who man deems power to, rest assured, God is still on His Throne, and His will, in His way, will be carried out regardless of how we might try to interfere. We may not understand these recent events, and some may even frighten us, but as I have said before...Everything that comes to us has already gone before the Father. He knew this day before we were made. He knew we would be here today. And He has a plan, and a promise, to never leave nor forsake His people. So my friends, there was no perfect candidate, because the Name of Jesus Christ was not on the ballot. Now we must step forward, as a united people, and walk in the Truth. If we do that, we have no reason to fear what tomorrow may hold. Rest assured, God already knows what lies ahead, and His Name must be Glorified. If we keep our voices silent, then will the very rocks cry out. Praise His Name, for this is the day that the Lord hath made. Let us rejoice and be glad in it! For God is still God!

Making progress (Alli update for Fri & Sat)

This has been a long, but enjoyable two days. While I know people have very differing views of this weekend and what it's all about, none can doubt that it usually intels some great family time. Whether you do the fall festival or carnival thing, church supper, or trick or treating, almost everyone has great memories to share from this time of year. And after all, it's truly what you make of it, and how you build up one another and Christ through the fellowship of this fun time.
So now on to the question I've been getting lots of calls and emails about. How was Alli's appt? Well, there were some good things, and a few areas of concern. The first that will excite most, is that Alli doesn't have to wear her helmet. And man, I was all ready to dress her up as a football player last night! But alas, instead, she was a Clemson cheerleader (sorry, my girls were brain washed as early as my oldest daughter's beginning by their aunt T and uncle M, and they've loved it!)
She's to continue avoiding anything that would raise her blood pressure or heart rate because they feel there are still some issues that need to be pinpointed, and over activity could prolong her recovery, not knowing the extent of what may still have to be done in aiding her recovery. They discussed her skull fractures and separation being on the brink of worry/no worry. If she were a year older, they'd feel confident of it growing back together and healing over nicely. If she were a year younger, they'd be leaning more toward it growing apart instead of together. So over the next year, she'll be watched closely to monitor which direction it goes in. Next month we'll have another CT, not expecting healing yet, but just hoping to find it has not went the other direction.
Aside from the helmet, here's the run down. After going over all the quirks I've mentioned to you all here since the accident, and doing his evaluation, we together discovered some things and some testing that needs to follow.
The fever and hurting she was having? It wasn't a chest infection or ear infection. The bleeding that had occurred in her head during the accident had leaked into her spinal cord causing inflammation and pain. Our doctors here didn't have the benefit of that info because they had not received the hospital reports at that time, so they did the best they could, and still ultimately took the right course of action with antibiotics.
As far as the speech, walking, mood swings, and indecisiveness go, they're going to wait for the 6 week mark for "the dust to settle" and see how she's rebounding at that time. Some of this could be post concussive syndrome, and would start to show signs of panning itself out by that time.
But one thing of concern is that when you put all her symptoms together, it seems to point to injury further into the right ear being very near where the fractures occurred and separated. If so, this could explain many of her symptoms causing her pain, speech, walking, loss of appetite, nausea spells, and moodiness. Testing is in the works of being set up sometime between now and next month to check her hearing, fluid, and injury to that area internally. Depending on these findings, an MRI may be done, as well as a therapy evaluation.
The scary episode she had Monday alarmed the doctor, and if it happens again, wants an EEG ordered right away (I'm not sure what that is, but I'm sure one of our Dr. buddies will explain it soon. I do know that they would be looking for bleeding, swelling, and further injury to the brain). This isn't thought to be very likely at this point, only if that episode happens again.
Alli continues to have trouble resting at night, although her spirits during the day are improving. She went on her first small crowd outing today, going to the Fall Festival at my home church where most of my family still is. Small country church, but lots of love. We all enjoyed ourselves, and on the Rhino led hayride, I saw beaming from Alli that I haven't seen in almost a month. If I had been carrying my camera, I would have snapped a million pictures of that ride down the old dirt road. I promise you this though, it's image is preserved in my mind and in my heart. And Bless her, she fell asleep on the way home and is still in the bed. 8:30 my friends! Shall we all rise for the Hallelujah chorus?
We haven't been back to our church yet. It's on the large side, and quite honestly, I feared her catching something from the crowd of well wishers that will be around her. But we may try going tomorrow, just depending on how she's feeling. It's been a long weekend for her, so we'll have to play it by ear.
Our first week back at school went surprisingly well, although we could tell once back home, it had usually exhausted her. But being back into some type of normalcy was nice, and I was especially glad to be back with my sweet friends (also known as co-workers). That is one precious group of people.
Okay, that's about it for tonight. Remember to "Fall Back" your clocks tonight or you'll be chilly in the morning waiting for someone to open up the church doors! Also, please remember to vote Christ's morals on Tuesday. Ooh...I wonder if that was just a separation of church and state faux pas?
Love you guys! Keep praying!