I am on my way to take the twins to the airport; therefore I don’t have tons of time to write but I wanted to post some pictures of Taylor and give a quick update. Yesterday, Taylor had her intubate tubes and external ventrical drain taken out. 

Finally, resting peacefully!!

She is now breathing on her own! YAY!! This morning she spoke for the first time after looking at some pictures. Geez, I felt like these were her first words…due to the emotions that I felt! Overall, she is doing well. However she has come down with an infection. We are praying that it is not the shunt. This is the last thing we want! It does turn out that she has pneumonia…so hopefully that is the infection they are seeing. We are waiting for cultures to come back with the results. Until next time, I have a few pics to share with you.

Everything is gonna be alright!

Continued prayers are always appreciated! Thank-you,

Eden

May 20th 11:55 am
     “Sigh of relief!”…A BIG one! Taylor was taken into the Operating Room last night at roughly 7:15 and came out a little before 10. The doctors seem very optimistic to the results. They found that part of the shunt tubing in the stomach had been disintegrated amongst tons of scar tissue and a hernia. They removed and replaced the tubing in her tummy and head and replaced the valve in her brain, but left some of the old tubing in her head that was attached to the bone. She is still intubated and continues to have the external ventricle drain in her skull, which hopefully y both will come out today. About an hour ago they stopped the pain medication, which will assist with her waking up. She just has been opening her eyes when I speak to her, and just recently jerked when she heard her Dad’s voice on the phone. Even though we are here in this hospital, there is a HUGE peace and tons of joy in my heart. I am optimistic that we just finished our climb up the mountain and are excited that we are on our way down. I will continue to keep you updated on our journey through this trip that we are on.
     Meanwhile, what a blessing and joy we have experienced through all of our friends and family. I can see that as my relationship and faith have both grown with God that he provides people when in need. Life is not meant to be done alone. Even though I have felt it at times, I realize that I have never been alone, and when I do feel it…someone ALWAYS seems to show up! Amazing that God always provides what we need…sometimes we might not be asking for what he knows we need. I have definitely been provided with a massive amount of friends that have come together to assist me throughout this entire process. They have been part of my strength. They have worked together and assisted with things such as: taking over for me at my home with such jobs as caring for the twins, caring for our animals, taking kiddos to appointments, making phone calls, assisting with the daily chores at home, shopping for groceries, and simply just sitting next to me to let me know I am not alone. I don’t know if they really know that simply folding a load of laundry is one less burden that is lifted for the day. To them, thank-yous seem hardly enough. Last night, more than a dozen friends showed up to support Taylor and me during the surgery. That does not include phone calls and texts that were sent. It was great to laugh and enjoy the humor and fun in everything. I had always dreaded the moment if and when Taylor ever had to have her shunt replaced. In actuality, it is not the most complicated surgery for a Nero-surgeon, it was just something that did not sit right with me, but when I saw all of my old friends, new friends, and some that I just met last night reach out to me it was great to see the fellowship that we all are capable of. During the wait, the waiting area became very loud with laughter and my friend Jase looked over at me and said, “Isn’t this what it should be like when a bunch of Christians come together during a time like this?” He was right. All the worries went away and the joy in each other was present. Our faith was all united in God, and by the end of the night that faith shined through!

Eden

Last night was definitely an eventful night and with only two hours of sleep I am going to give a brief update to keep everyone informed. Yesterday, Taylor slept all day…she was extremely tired and experienced her headache and vomiting spells. As the day and night progressed, Tay began to vomit consistently and was showing signs of regression by her slow and lack of response to others and her heart rate was getting lower and lower. Therefore, the Doctors decided to do an emergency procedure by putting in an external ventricular drain. Without giving you the yucky details, I will simply say that they inserted a tube into her brain which is inserted into her Shunt that relieves the pressure and fluid from the brain…which they believe is causing her illness. During this 3 hour process last night, they decided to intubate her so that she wouldn’t feel anything today or experience anymore trauma. It is has been quite difficult seeing her unconscious…and am looking extremely forward to her being her old self!!

     I was able to arrange for the twins to end their school year without repercussions in order to leave on Friday morning to spend the majority of their summer with their Dad in Tennessee. I haven’t been able to give them the attention that they need, and need to focus on getting Tay back to her spunky self. I don’t think it has set in that they are leaving in 3 days for at least two months. Ugh, I am going to miss them dearly.

     Taylor’s surgery is in two hours, and I want to be strong for her. I can tell she feels my energy in the room. You can call it a coincidence and even though she is medicated and asleep  it seems that every time I become emotional her vitals seem to show it. I plan on writing some great news tomorrow! Until then I say thanks to all my friends for your unconditional support, prayers, and love! You are truly a light for my family.

Eden

(Written on May 18th, posted May 19th)
     The alarm sounded at 5:55 am this morning. As I sat up begin my morning routine in the “Little” house, Tay quickly sounded off what seems as a routine to screaming “my head hurts!” Ugh, that was the three words I have been dreading to hear. Even though I hoped and prayed that we had found the answer for what was causing the headache, I guess deep down I knew something was not right. I have to admit I worked really hard at trying to convince myself otherwise…but knew in my heart that the surgery I have dreaded for so long was right around the corner. Taylor will be having surgery tomorrow night to revise/replace (not sure which yet) her VP shunt that she has had for more than 16 years. This may not be a huge deal to some…but for me it has been one that I have hoped would never come. I find it extremely scary, especially since it is considered “brain surgery”.
     Even though I knew what was to come when I took Tay to the E.R this morning, I didn’t realize the frustration and fight that would come with it. As I carried her into the E.R, I was greeted by an E.R doctor that was a little too calm for me. She wanted to do the “usual tests”, which they had done and done AND done and seemed to ignore me when I explained that there is already a plan in place for Taylor to be immediately admitted. After she asked me Taylor’s medical history for the 5th time while she held a clip board with it written on it, I suddenly turned into the new character that should have her own comic book who I call “Psycho Mom!” I had to remind myself that I was a Christian woman many times as I nicely told the Doctor that I refused to give her anymore information until the original plan was followed. Funny how that worked, we were in a room within the hour. As I celebrated that victory, I realized quickly that another challenge was on the horizon. You see, Taylor’s neurosurgeon that we haven’t needed in 16 years has decided to go out of the country for 5 weeks. Figures, doesn’t it? Therefore, we have had to see his associate who we don’t really know, haven’t heard good/bad things about her, AND are not 100% sold on that she knows EXACTLY what is best, and l can’t forget the poor beside manner. I am not saying she is not a good surgeon or isn’t competent, I am just not completely confident at this moment. If you know anything about Nevada, our health care system is not anything to write home about (at least writing good things!!). So, during my Psycho Mom moment I began calling various Doctors in California that I had googled. I found an awesome one that would take Taylor on the spot, however the hospital there would not accept our insurance, and the Doctor and I were unable to find anyway around it. So, I began another mission…a 2nd opinion. Not allot to seek out for..you would think? Well between the hospital pediatric doctor, myself, and friends who began calling other neurosurgeons that were referred by friends or colleagues. We went through at least 6 different doctors and spoke to each one of them and none…NONE would see Taylor because they were afraid of stepping on toes! Not one!!!! Hmmm…last I checked I lived in America, where I had freedom to choose. Where is my choice for my daughter’s life? Gotta let God handle this one…gotta have faith.
     I could go on and on, but I lift this one up. Meanwhile surgery is scheduled for Tuesday (tomorrow) night at 7 pm.
Till tomorrow,
Eden

     It has been pretty cool  experiencing friends and people I don’t know from church coming up to me and expressing “that they like what I am writing”, or “that what I am writing has meaning for them”. Even much cooler for me, because I don’t consider myself even close to a writer, and with that has come pressure to write something really meaningful for others. Initially, when I decided to blog, I wanted to show the humor within my family…the humor that comes with all the challenges. However, it seems that even though we laugh consistently and try to make light of the most serious of situations (especially after the fact)…we haven’t heard our usual laughter in the Little household lately. The energy has definitely been different around here. This is explaining why I haven’t written in awhile. I wanted to have something light and humorous to write about since my last few entrys have been more on the heavy side…AND I started this blog to give you an experience of what truly happens in a home with raising children with special needs…the good, the bad, the loud, the quiet, and the ugly!! So that is what I am going to do. This is what I am called to do.                                                           

     Last I shared with you, Taylor was having her headaches and vomiting spells again. I took her into the hospital that morning and for the third time and again after all the tests the Doctors couldn’t figure out what was wrong. She was admitted that evening and we stayed in the hospital for another five days waiting to see if the headaches went away and when they did waiting to see if they would come back. To make along story short, Taylor has a VP shunt (this is a tube that inside of her brain that is used to drain fluid from her brain to her stomach). She has had it for 16 years and we have been blessed to have never experienced any difficulties until now.  They believe these headaches and vomiting spells are related to the shunt. They are almost certain she is having an intermittent shunt malfunction. The Doctor’s think she might have ”Split Ventricle Syndrome” or she is extremely constipated (Don’t tell her I wrote that!, hehehe) causing the fluid to not drain properly in her stomach. However, due to all her scans and x-ray coming back semi-normal..they are puzzled to what it might be. Due to the longevity of her having the shunt there are new difficulties that have occured…they can’t just take it out and replace it…it could cause major internal bleeding, so basically what is the outcome of all this…only GOD knows…we are at a standstill. Meantime, I am doing my hardest to find a Doctor in a different state to take her to that has a clue. I’m praying for that!

Meanwhile, since we have been home Taylor has not been the same, scared to sleep on her own, scared to go school, she clings to me daily. I believe she is having severe side effects from all the meds including the steroids they gave her in the hospital which has caused her extreme discomfort in all of the muscles in her body. She resists walking and refuses to do anything on her own anymore. Those who know her, know that she has an unbelievable spirit..one that is unforgettable! It is truly breaking my heart. I love that child so much and to see her go through this has been maddening and frustrating. Yesterday, I took her to a nearby pool. With her resisting , I carried her into the poo. She clung to me for a few minutes, but once she realized that her muscles didn’t hurt she spent the next hour in the pool swimming like she always had. She smiled and laughed just like she always had! Wow, what a blessing that laughter is from her. Today, the pain continued.

    Meanwhile, I feel as if my two other children are being ignored from me. I am so wrapped up and puzzled by her illness, that I feel as if they are not getting the love and attention from me that they need and deserve. Erin has been waking up daily with blisters on her feet from her leg braces and the lack of proper shoes to fit them. Jorden broke his glasses (these were his back-ups) and I was so irritated…because it was ONE more thing I had to do was to go get them fixed! I felt so guilty for getting upset with him. When in reality, they are being extremely cooperative, loving, and patient with being shuffled between friends and not knowing who or what they are coming home to after school.

     That brings me to today…I had a feeling for the last week that the message at church today was one that I needed to be present for. Do you ever fill that you walk into a building or a place and know that there is NO other place that you should be but there? Well, I knew when I walked in Central Christian Church in Las Vegas, NV that I was supposed to be there today! In fact, I think most of the people that know me knew I needed to be there because when I walked in the door I had many people telling me to go and sit down. I learned allot from this service today…but mainly I learned “Trust God no matter what!” I don’t know the answers, but I know and I have to believe that God does! Jud Wilhite, the pastor at my church said today “take your pain to God and work it out with him”. It is easy to forget that. Isn’t it? If you want to check out the service go to: www.centralonlinecampus.com on Tuesday @ 5 pm PST.  Wow, what a difference it made for me today!   

     Also, on a side note…thanks for being patient with me. I promise that my blogs will come more frequently. I don’t know if it helps others…but it helps me to write…so I will attempt daily, even if just brief.

   They sang this song at church today…And I believe it says it all! “There will be an answer.” Hope you enjoy!

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