Good Morning,

We found out mid morning yesterday that there was a chance the girls cold come home a day early, assuming Dr. Feldstein cleared Kelsey to fly. I just spoke to Nicole and Dr. Feldstein gave her the okay to return home.

With that said, we should all be in Rincon by late afternoon today. I will update later with more details, I just wanted to let everyone know today is going to be a good day.

A.

Nicole watching Kelsey watching Cambrie

Kelsey, Cambrie and Nicole during the heart Echo

Kelsey and Daddy

Hello Everyone,

I apologize for the delay in putting up a new post, I have no excuse, I have been lazy.

The last few days have been a challenge more so for Nicole than Kelsey.  Now that they are home from the hospital and off of their monitors, Nicole is being very cautious about what Kels does and how she is acting.  For example, on Saturday they took a short walk through the woods around Shannon’s and then went to dinner with the rest of the family.  Nicole said Kelsey fell three times in a matter of minutes, just walking across the restaurant.  Some of the things we were told to watch for, aside from fainting and losing consciences, is dizziness and stumbling.    These symptoms could mean there is a fluid leak or her heart stopped beating.  Or, it could simply mean she is two, has gone through a traumatic experience and is just exhausted.  But how do you objectively distinguished the two.  Especially when you are an very concerned mother terrified of the months to come.  Along with Kelsey needing constant supervision, even more than ever before, Cambrie does not know how to be by herself, even if you are in eye sight of her.  This, of course, is due to being held for almost 10 hours a day for 10-12 days.  That will pass, we know, but for now it is placing a lot of undue stress on Nicole.  Not mention the helplessness I feel while being a 1000 miles away.

Apart from these things, Kelsey sounds great.  I spoke to her at least 8 times on Sunday.  She knows how to call me from Nicole’s cell phone and found time to catch me up on her day.  She called to tell me  she was going upstairs, then she called back to tell me she was upstairs.  Then she called to tell me she had a chocolate bunny, followed by a call just to say hello.  These are all positive signs that we will have Kelsey back to full speed very soon.

The message Sunday from Pastor Wesley was a continuation from last week, which I missed, on trials and suffering.  I know many of you have had a time of suffering in your life, some worse than others.  For those of you that haven’t had such an experience, I hate to say that one is coming.  Not to be crass or without compassion, it is just a fact.   The unforeseen joy in a suffering time is that the later will be greater than the first.  Look at Job, all that he had was grand.  Then it was stripped away and he had a long period of suffering.  He never took his eye off the ball, and the end or later, was SO much more grand than the first.  I’m paraphrasing, but you get the point.  So why did I say that?  Because I needed to hear it again.  What we have dealt with and will continue to deal with is helping us in way that will make our faith stronger and more vibrant.  I need that, especially as the leader of the family, in order to teach my children where their strength truly comes from.  I did not realize this until Sunday morning.  Kelsey is too young at the moment to truly understand her condition and circumstances, so it will be up to us (Nicole and me) to explain to her.  While Nicole has a firm grip on reality and is totally immersed in the  recovery and healing of Kelsey, by herself, I learned that was not the best time to share my new found wisdom with her.  She knows, with out a doubt, where her strength is coming from so I left it alone.  I am not trying to say that we have suffered to the extent Job did, but I am saying that I understand on the other side of this we can look back and see the lesson God intended on it providing to us, whatever it may be.  Will we meet someone that will go through this type of thing themselves?  If so, I can guarantee that person that Nicole will be a fountain of knowledge.  Will I be placed in a position to give to others as others have given to me?  I hope.  From the beginning, and in all most each post, I have commented on how someone has done something so heart felt and genuine for my family.  I am looking, almost begging, for the opportunity to do it for someone else.  Not for ego or recognition, but because as believer and a part of a body, I want to share my story.  

For now, the plan is to bring the girls home Thursday, March 27th.  Kelsey has her follow up with Dr. Feldstein on Wednesday and we are praying for a good report.  I have already spoken to Greg and we will bring everyone home mid afternoon Thursday.  As time gets closer, I will update you and let you if that changes.

I finally went through the pictures and did not find many that very good.  I have still not learned how to post the pictures the way I want to, so you will see them at the top as individual links.  Thanks again for stopping by, I will continue to post each day, or at least every other day as long as I can.

Good night and God Bless,

A. 

Happy Easter,

Good evening to all and happy Savior Resurrection  Day!  

I have not updated in a day or so and wanted to take a minute to let you know that I haven’t forgotten about you and that more news on Kelsey is coming.  I am also working on sorting out the last of the pictures and I plan to put those up as well.   Hopefully by tonight I will have a new post up.

 

Thanks for checking in on us, be sure to stop back by soon.

A. 

Happy Good Friday Everyone,

I haven’t updated in a couple days and thought I would let everyone know what is going on. Yesterday and today have been good days considering all circumstances. Kelsey is getting her appetite back, along with her balance. Nicole can start to see the true Kels coming back.

The nights seem to be more of a challenge, however. Last night I was awakened around 2:30 am to Nicole calling, saying she did not know what to do. Kelsey was awake and seemingly in pain. She would cry out for Nicole to hold her, then cry because she was touching her. This of course led to Cambrie waking up and needing mom’s attention as well. Just as she would get Kels calm and try to feed Cambrie Kelsey would cry again, disturbing her sisters feeding. This went on for hours. I honestly do not see how Nicole is doing it, she is such a strong person. I guess I will never understand the true depths of a mothers love, at least not from her perspective.

Other than that, as I said, Kels seems to be doing okay. She still has pain in her neck from the muscles constricting and her incission is itching terribly. These are things that will pass, time does heal all wounds. Given where we have been, these are minor problems that we can deal with.

We learned today that our follow appointment with Dr. Feldstien will be Wednesday morning, exactly 2 weeks from surgery. We have now made 5 days with the drain removed and, to my knowledge, there has been no fluid leak. Therefore, barring any unforeseen complications, Kelsey should be cleared to fly home Wednesday afternoon. I am in the process of arranging our return trip and will let everyone know when we are expected to touch down in Savannah.

Not much of an update, but not really much else going on. I do want to say that I am continuing to see such great things coming from people that have been so touched by Kelsey. Thank you Jennifer Gaines for all that you are doing. Likewise to my brother and all of his friends in Louisville, KY. I am still recieving correspondence from people all across the nation, including my home town of Natchez, Ms. Mr. Yelverton, we thank you also!

As we all pray for Kelsey I have to ask that we shift, or at least add emphasis, to Nicole. She is an OUTSTANDING mother. Her care, compassion and devotion to our children have made them who they are. At this point, she has been living on 3+/- hours of sleep per night, and has been for at least 3 years. Please lift her up and ask for continued strength.

Good night and God Bless,

A.

Good Evening All,
I want to start off tonight with a huge Praise God!  Kelsey called me around 6 pm and said, “Daddy, I’m going home!!”  Then I heard Nicole in the background say she had to go but would call me later.  They just called and they are all on their way home to Shannon’s in NJ. 

I left yesterdays post rather abruptly because we had spoken with Dr. Feldstien and his comments were not very uplifting.  As I had said earlier in the week, the EKG showed that Kels’s heart was stopping for a 4-5 second pause with a semi-regular frequency.  The discussions that followed the EKG included long term, difficult monitoring, possible long term hospitalization and even a pace maker.  After a second consultation with Dr. F, he informed us that he was not sure exactly what we should do.  His concerns were that although he felt confident that he was able to alleviate the pressure on her brain,  her heart may continue beating in the same irregular pattern for the 3-6 months following the surgery.  This would mean that while we were waiting for the brain to “reboot”, her heart could possibly stop and not restart itself, hence the pace maker.  After further consultations with the cardio team, they felt that we did not have 3-6 months to wait to see if the brain would regain proper control of the heart.  Simply put, at this point we had two choices:   1) Perform another very evasive surgery to install the pace maker or, 2) wait to see how the brain reacts to surgery and pray her heart doesn’t stop for good.  Neither option was sounding good.

After looking at the results from the sleep studies done after her first decompression surgery, we found her heart was pausing then as well, no one caught it then, however.  This means that either the “pausing” came back very soon after the first surgery, or it simply never went away.

With this new information, we were told that the risk for the pace maker causing more problems than it helped was very small.  Meaning we do not have to be concerned about the once feared inherent problems that go along with  the pace maker being part of her body.  On the other hand, the risks involved with the actual surgery to install it out weigh the risk in simply monitoring her for the next 6 months in hopes the brain will regain proper control of the sinus node.  Simply put, no pace maker for now.  If after 6 months the “pausing” continues, we will then be looking towards having it installed.  I hope this is all making sense, I am still a little confused myself. 

Nicole is very nervous about the added responsibility of making sure her heart continues to beat.  Insuring that she is breathing was hard enough as she slept, but now we have to watch her closely 24-7.  Nicole has been so strong all along, and I am confident that she will be able to handle this as well. We are looking into CPR classes and I will be asking some questions about a defibrillator (just in case).  I still can’t help but claim this as a victory, proclaiming once again that God is walking hand in hand with Kelsey.  He has 3-6 months to correct her heart beat, but look what was accomplished in 6 days!

I am pretty sure I have left out some details, and once Nicole reads this tonight, I may be correcting some of these statements.  I flew home this morning and was not able to speak with the Dr.’s myself, so this is all coming second hand from Nicole.  As I said at the beginning, they are home now, which is excellent news.  Kelsey has “sea legs” and is still pretty weak, but after a day or so with her sister and cousins, she should bounce back pretty quick.  I am not sure yet when the follow up will be with Dr. Feldstien, most likely sometime towards the end of next week.  So, Greg, I will be getting with you first of next week to discuss our (their)  return to Savannah.

As always, I will conclude with some thank yous.  When I returned home, I walked into a clean house, thanks Lori and Kim.  Not only that, but Laura, Candy, Kara and Anna (from Grace Community Church) were there to surprise us with some cleaning.  Sorry, ladies, that there was nothing left for you to do.  But, I will promise in a week here alone I can give you something to clean, just ask Nicole.  To all of you that have posted comments on this site, I say thank you as well.  From the guys at work, to other people across the nation I do not even know, trust me when I say this will all be explained to Kelsey in due time. We will make sure she understands how generous and thoughtful people can be.

Good night and God Bless,

A. 

Good Evening Friends,

This will be a fairly short post because I am still trying to digest the afternoon news.

This morning started out pretty good.  Kelsey slept very well, not waking until around 11:00 am.  She is starting act more like herself every day.  Last night we caught her sleeping face down with her rear sticking up in the air.  That is comfort right there!  The echo was scheduled for today and we were not looking forward to that, seeing that Kels is really not liking doctors and nurses.  The only way to calm her enough to complete the ultrasound was to bring Cambrie in and let her sit with Kels. 

I started telling the whole story of today, typed about 6 paragraphs and in the proof read realized now is not the time to update.  
 

Kelsey is doing okay, but we are now dealing with a problem with her heart that has Nicole and me worried.  I know it is not fair to post remarks like this and leave it, but at the same time I need to clear my head and update when I can concentrate.

Please pray for our doctors, pray for Nicole, and as always, continue to lift up our little Kels.  God has this one, too, pray that I don’t get a clouded vision of that.

 A.

Below are a few pictures from the last few days.  There has not been alot to photograph, since we are still in the same room and she is feeling about the same.  Once our scenery changes, we will put up some more.

Watching Dora With Her Froggy Socks On   Kels was given some socks that look like frogs, dogs and cows.  Here she is with the frog socks.

Incission  This is the incission, kind of hard to see and looks a little gross, but its here for those interested.

Smiling  Here she is showing that can smile, she just hasn’t felt like it.

Happy About the Makeup, Not Happy About the Camera  There is makeup around the eyes, the bruise is from a monitor used during surgery.

Hannah and Kelsey    Hannah arriving at the hospital          

Temporary Nursery  This is the life Cambrie has been living since last Wednesday

Good Evening All,                                     And what a Day!Today has been one of those that you look back on at 9:33  in the evening and say, “Whew, that one is over, wonder what tomorrow will be like!?!?”

This morning the drain came out, along with the arterial IV and one of the 3 regular IV’s.  This was a good thing in a few ways.  First, the drain was able to remain in for 5 days.  Dr. F says that is the max he leaves one in and most of the time doesn’t even make it past 3 days.  Secondly, Kels can now move about at her leisure, not that she wants to, but she can.  Thirdly, flushing that particular IV burned her, and she hated having that long board taped to her arm.  Have you ever put tape on your dogs nose and watched him try to get it off?   Yeah, right, I am the only one?  Well, that is kind of what it is like having the board.  She wanted to scratch her head but the board was longer than her fingers, she wanted to eat, but could not hold her food, she wanted to color but had to hold the marker between her two fingers.  Very minor aggrevation, I know, but at 3 yrs, the small things can turn big quickly.

Doctors orders are for her to be able to sit by herself for at 1 1/2 hours without getting sick or dizzy.  We made it to 45 seconds before she began crying out in pain.  We could only get her up by raising the angle of the bed up to 30 degrees.  Nicole did pick her up and let her look out of the window for a minute or two, which she has wanted to do since Saturday.  That’s fine, small steps are the longest ones on the way to recovery.  She is still having the 2-3 hour periods of time when she is very grouchy and screams at the staff.  Partly because she is scared of any one in scrubs or lab coats and partly because some of the things hurt.

So what went so wrong?  The main reason we had to make the trip as soon as we did is because of her heart rate, remember.  We were told that the brain is causing the heart to act in ways that Dr. Feldstein had not seen before with Chiari.  After the surgery, he wanted us to meet with the cardiology team to discuss different ways of monitoring Kels until the 3-6 month “reboot” period is up.  It was not until today that we were able to speak with someone from cardiology that understood Chiari and the effects it was having on her heart.  He brought us the results from the EKG from a few days ago, and his response was not quite what we wanted.  He told us that if she was 70 – 80 year old man, then he would not have been as concerned.  What he found was that Kelsey’s heart is beating in a pattern of normal rhythm then a 4-5 second pause, then restarts to a normal rhythm.  The concern, of course, is that it may not restart.  Her sinus node, the bodies natural pace maker, is being affected by the Chiari, we think/hope.  What we are also hoping is that after 3-6 months, the brain will no longer feel the pressure, and the sinus node will go back into normal operation.  Nicole made a very valid observation, “Why do we have to have the condition that is rare to both the neurospecalist and the cardiologists?”   I don’t have an answer for that.  We were made of aware of the possiblity before the surgery that we may be facing a brain stem issue, but at this point there is no reason to even chase that rabbit.

So, after all of this news, we will be remaining in the hospital at least through Wednesday, if not Thursday/Friday.  They are doing an ultrasound tomorrow of her heart and possibly other tests, depending on the outcome of the echo.  Just as we take a 2 steps up, we have to take 1 back.

On a lighter note or two, I wanted to again thank all of you for the kind words and encouragment.  From my brother, Jason and his group at work, to Jen Gaines and all the work she has done, to Pastor Wesley for just being himself, to Lori for being Lori, I cannot tell you what it means to us.  In the past, I have had to watch my children experience things that caused them pain, Callie with her RSV, then stiches, then a car wreck.  Kelsey with her struggles from birth, and then Cambrie with her struggles with Kelsey (that was a joke.)  During these experiences, I have been rather weak stomached and had a generally hard time.  But from the moment we  went to the ICU in Savannah, I felt a sense of strength, a solidness that can only be derived from the Almighty.  So thank you for praying for us and with us, I can testify that God hears us.

Going along with the, “what will tomorrow bring” theme, Hannah and I were able to see Ex-American Idol David Hernadez sing this afternoon.  He came into town for a few interviews and made a stop at Columbia Presbyterian to meet a few of the kids.  He really can sing, that kid was good.  He’s not as good as David A., but he’s got talent none the less.  In this city, there is always something going on, I hope to experience some more. 

More updates will come tomorrow, and as always, thanks for caring for our little girl.

A.

Hey guys, most of you know I am definatley not a writter—thats why Anson does the site, but I want to say a few things so ingnore the grammer and spelling. I do not have the time to go back and check myself.

 I woke up this morning with a tear in my eye and a smile on my face. I get to hold my baby today!! We are in the room waiting for the spinal drain to come out!  I have been aching to hold and snuggle her, and the time is finally here.

The news today is we watch her after the drain comes out and if there is no leaking and if she can sit for 1 1/2 hours without severe headaches or thowing up, we get to go back to our NJ home. We could go home tomorow or up to 5 days from now, depends on little Kelsey.

I realize in the venture we are going through that God has been so clear. We say we can not see God, I do not believe that anymore. Thats why he gave us other senses.  My wonderful Kelsey could have died with her Apnea, could of died with her first surgery, she could of died with her heart starting to fail, she could of died under sedation, and she could have died or not been the same child comming out of surgery…. BUT my little Kelsey is comming home the same way she left Rincon. I have prayed for Kelsey’s healing as well as all of you. I knew Gods will was for her to be healed because it says so in his book. I also know that it was hard for me to undrstand even though I believed she was healed why we were back here again. I finally get it. I know everything is Gods timing but when it comes to pain it is harder to be patient. God has already healed her evey time these events have occured. I now know how I can explain Kelseys condition to her. That has been weighing heavy on my heart but I know now that she will always be a child of God.  I also want to say that God does not do us just small favors.  Kelsey has a rare condition. She also has had three life threatining symptoms with her Chiari. One that has never been heard of by our Chiari specialist and two of the symtoms only are in 2% of Chiari cases.  God has delivered this child and has given us a gift to raise her even longer for him.  Why did God pick me?  I used to say to have to go through all of these trials.  I now realize how lucky we are to get to experience the miracles he still has for us.

Besides the obvious that God has healed Kelsey again, God has sent me a wonderful cousin that has opened not only a place for us to stay,  but a “home” for us. We have been provided a car and a wonderful family to go though this with, along with her church family here that has also taken us under their wing. We were given a family that was willing to sacrifice time and money to fly her here and back fast and comfortably so she can heal as needed without the extra trama. I have been provided with a wonderful pastor that has reminded me of Gods love and has helped my husband help me.  Kelsey has been given a church body that has helped watch after her little sister, has sent her toys, has prayed, and loved on her. We have been blessed with people helping us with finances, even high schoolers that are trying to raise money for our little girl. Anson and I have wonderful supportive families, we would not be able to travel this Journey without the love and support from them.  I also have to say that Anson has been amazing through this and filled in the blanks when I could not be here. His strenth has kept this family going.  Pray warriors for Kelsey thank you for hanging in there. We all did this by doing what is right and having a compationate and a trusting heart. Thank you.  You all reading this know what a animal freak I am-God also put us in charge of them, do not forget!!  I have not had to worry about them one bit. I have friends loving and caring for them without a complaint. My life here in the hospital has stood still as the world goes on. I have felt no blood flowing in my body, and my heart has felt broken, only to be replaced with Gods hands touching my heart. He has guided my Kelsey doctors hands and have given other doctors the signs they need to take care of my little Kelsey.  I hope we do not have to go through this pain and suffering again. Even more for Kelsey, but God is good all the time, and all the time God is good. 

Thank you again for loving on my family and walking with us through Kelseys journey. We will update you later after the drain is removed and hope for know throwing up!!!Love to yall, miss you, and to whom it may concern kiss my animals for me, spanking if needed

Good Evening,

Wanted to put up just a quick update to let everyone know that today has gone almost exactly like yesterday.  The morning was good, little pain and very little aggrevation.  Then around 3:00-3:30 pm she started having a lot of pain.  We gave her a bolis, helped her fall asleep and she is still asleep now (5:51).  Last night was good, she ate, watched a few movies and then slept, ALL night except for about maybe 30 minutes.  Lets hope this trend continues.

It is looking like the drain will come out sometime on Monday, unless todays CSF sample shows any type of infection.  From there, we should go to NJ sometime between late Monday night and mid day on Tuesday.

On more of house keeping note, Nicole and Kathleen have spoken with a few people that had desired to send a financial support donation and they gave out the church’s address.  I learned today that a couple letters have been returned.  For those people, the correct address is:

Grace Community Church
PO Box 1369
Rincon, GA 31326

Welsey or Dot, if this is still incorrect, please let me know.

I am on guard duty again tonight so I will post more as more happens, but for now I can only say so much about a sleeping  little girl.

A.